Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal

*Debajanee Lenka, Amarendra Mohapatra and Chittaranjan Kar*

## **Abstract**

Reconstructive surgery (RCS) has made a significant improvement in deformities and disabilities management among leprosy patients. However, it seems that due to existing misconceptions that is hereditary and not curable regarding leprosy still lead to concealing the disease, therefore the patients hesitate and unenthusiastic to avail these facilities. This study was carried out in Sonepur district of Odisha with 60 RCS has undertaken leprosy patients. Out of 71 operative patients during 2000–2012, only 60 patients were alive and interviewed, in this study entire universe was used without any sampling. A semi-structured questionnaire was administered to assess their understanding, better quality of life (QOL) after reconstructive surgery. Nearly, 98.6% could meet their expectations to some extent, another 1.6% failed to get their expectations. Among all the RCS patients only 33.3% changed their profession to avoid further risk in their life after surgery. This study concludes that Reconstructive surgery plays a vital role to bring for leprosy patients into their normal life and lead their life in this open society of today. The result implies a motivational message for the deformed leprosy patients to come forward and depicts to encourage the surgeons to counsel the patients towards reconstructive surgery, which will reduce stigma in due course.

**Keywords:** leprosy, stigma, RCS, QOL, knowledge, acceptance

## **1. Introduction**

Leprosy is a chronic infectious disease caused by *Mycobacterium leprae* (*M. leprae*). It is a micro-organism which has a predilection for soft tissues of a human organism like skin and nerve. Now leprosy is known as a common cause of non-traumatic peripheral neuropathy worldwide [1]. This *Mycobacterium leprae*, the causative agent of leprosy, was first discovered by Hansen in 1873. Therefore leprosy is also known as Hansen's disease and considering it the first bacterium to be identified as causing disease in human [2].

The transmission of *Mycobacterium leprae* always occurs through upper airways and manifested as skin lesions with reducing sensation including nodule, pigmentation, and patches on some portion of the body. These lesions can affect any part of the body as a nasal bridge and oral cavity [3]. The above said causative agent of leprosy, *Mycobacterium bacillus*, is associated with a prolonged incubation period

between initial infection and development of skin reactions. The incubation period of leprosy is 5–10 years but it hardly takes 20 years to have appeared as skin patches, deformities, and disabilities [4].

The extent of social stigma aggravates due to the blind believe or the misconception that leprosy is not curable and is hereditary. The crippled limbs (finger and feet) add fuel to fire of social stigma.

Reconstructive surgery to correct deformities in leprosy has made dramatic and revolutionary changes in the lives of affected patients [5, 6]. Nevertheless, leprosy patients are still hesitating to avail these benefits of reconstructive surgery due to many reasons [7]. The existing reasons associated with leprosy lead to take delay treatment and concealment of disease in society.

Since history, the misconceptions about leprosy being a hereditary disease, lead to increase the level of stigma related to death and mutilation due to its existing attributed causes like deformity and disability. This misconception also leads to prejudice, discrimination and social exclusion which are resulting in infliction of congenital suffering on leprosy patients, which can have serious repercussions in their personal and professional lives [8].

Government integrated Reconstructive surgery unit in the health care system to reduce stigma, which caused due to misconceptions, and to eliminate leprosy burden in different states of our country with the help of PPP (Public-private partnership) program including Government and non-government organizations Contemporary to Govt. The non-government organization has put more efforts. NGOs had handled 1076 surgery cases whereas Government hospitals had done 921. Maharastra has performed a better result in comparison to other states with 495 RCS by both Government and NGO. The recorded data on Reconstructive surgery has been given below (**Table 1**).

**Table 1** shows that among 35 states all across India, Maharastra has performed well at both Government and NGO level, i.e., 39 and 456. Next to Andhra Pradesh NGO has performed 487 RCS. In Madhya Pradesh, the government has done 122, whereas 91 was performed by NGO. Similarly, Odisha has performed very nicely in Government level, i.e., 248 RCS in 2013–2014 and Chhattisgarh has performed as well in same Government level with 234 RCS than 5 in NGO. In NGO level the performance of RCS is far better than Government. In Uttar Pradesh, 235 RCS has carried out in NGO and 33 in Govt level. But some states have not performed satisfactorily in both. Thus, it gives an idea of RCS (1786) has been well performed in NGO level.

#### **1.1 State**

The present research has been conducted in Odisha, consists of 30 districts. Among these districts, seven designated surgical units have been inaugurated in few districts for leprosy RCS. These districts are Berhampur, Dhenkanal, Koraput, Sonepur, and Cuttack, etc. In Odisha 10 government institution and 5 NGOs have been recognized for performing RCS. In Odisha, the number of Reconstructive Surgery performed by the Government is 262 in 2012–2013, 248 in 2013–2014 and 307 in 2014–2015 (end of March) whereas NGO has not performed any RCS.

**Figure 1** the NGO-LEPRA Institutional Based Rehabilitation (IBR) is working tirelessly on post rehabilitation of RCS patients and provides free footwear and skill development training. The health staffs of this IBR have taken endeavour to aware the people about the system for early diagnosis and available Government facilities for leper patients.

In Odisha many studies have been conducted on leprosy, its stigma and how does it affect man and women, its community perception and knowledge about its

**111**

**Table 1.**

*Institutes and No. of RCS cases operated state wise.*

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

**Sl. no State Inst. recognized for RCS RCS performed**

**Govt. NGO Govt. NGO**

*DOI: http://dx.doi.org/10.5772/intechopen.86973*


#### *Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

#### **Table 1.**

*Institutes and No. of RCS cases operated state wise.*

*Current Topics in Neglected Tropical Diseases*

deformities, and disabilities [4].

feet) add fuel to fire of social stigma.

treatment and concealment of disease in society.

their personal and professional lives [8].

has been given below (**Table 1**).

in NGO level.

**1.1 State**

between initial infection and development of skin reactions. The incubation period of leprosy is 5–10 years but it hardly takes 20 years to have appeared as skin patches,

The extent of social stigma aggravates due to the blind believe or the misconception that leprosy is not curable and is hereditary. The crippled limbs (finger and

Reconstructive surgery to correct deformities in leprosy has made dramatic and revolutionary changes in the lives of affected patients [5, 6]. Nevertheless, leprosy patients are still hesitating to avail these benefits of reconstructive surgery due to many reasons [7]. The existing reasons associated with leprosy lead to take delay

Since history, the misconceptions about leprosy being a hereditary disease, lead to increase the level of stigma related to death and mutilation due to its existing attributed causes like deformity and disability. This misconception also leads to prejudice, discrimination and social exclusion which are resulting in infliction of congenital suffering on leprosy patients, which can have serious repercussions in

Government integrated Reconstructive surgery unit in the health care system to reduce stigma, which caused due to misconceptions, and to eliminate leprosy burden in different states of our country with the help of PPP (Public-private partnership) program including Government and non-government organizations Contemporary to Govt. The non-government organization has put more efforts. NGOs had handled 1076 surgery cases whereas Government hospitals had done 921. Maharastra has performed a better result in comparison to other states with 495 RCS by both Government and NGO. The recorded data on Reconstructive surgery

**Table 1** shows that among 35 states all across India, Maharastra has performed well at both Government and NGO level, i.e., 39 and 456. Next to Andhra Pradesh NGO has performed 487 RCS. In Madhya Pradesh, the government has done 122, whereas 91 was performed by NGO. Similarly, Odisha has performed very nicely in Government level, i.e., 248 RCS in 2013–2014 and Chhattisgarh has performed as well in same Government level with 234 RCS than 5 in NGO. In NGO level the performance of RCS is far better than Government. In Uttar Pradesh, 235 RCS has carried out in NGO and 33 in Govt level. But some states have not performed satisfactorily in both. Thus, it gives an idea of RCS (1786) has been well performed

The present research has been conducted in Odisha, consists of 30 districts. Among these districts, seven designated surgical units have been inaugurated in few districts for leprosy RCS. These districts are Berhampur, Dhenkanal, Koraput, Sonepur, and Cuttack, etc. In Odisha 10 government institution and 5 NGOs have been recognized for performing RCS. In Odisha, the number of Reconstructive Surgery performed by the Government is 262 in 2012–2013, 248 in 2013–2014 and 307 in 2014–2015 (end of March) whereas NGO has not performed any RCS.

**Figure 1** the NGO-LEPRA Institutional Based Rehabilitation (IBR) is working tirelessly on post rehabilitation of RCS patients and provides free footwear and skill development training. The health staffs of this IBR have taken endeavour to aware the people about the system for early diagnosis and available Government facilities

In Odisha many studies have been conducted on leprosy, its stigma and how does it affect man and women, its community perception and knowledge about its

**110**

for leper patients.

**Figure 1.** *An IBR of lepers at Sonepur.*

**Figure 2.** *Lepers at Kustha ashram.*

treatment, etc. But no literature is available on patients' perception after surgery. So the intention of this work is to explore the patients' perception regarding post RCS and its consequences. This study is conducted in Sonepur district of Odisha; the LEPRA society office at Sonepur has a rehabilitation center for leprosy patients. They did help me in getting the old patients contacts.

The aim of this study is to assess the patients' socio-psychological condition and their acceptance in society after reconstructive surgery.

**Figure 2** depicts about the lepers of Kustha Ashram in Sonepur district, Odisha. It has been established in the year 2001 by the Government to facilitate the isolated deformed and disability lepers from society. Government supports the patients to rehabilitate them by supplying footwear, cloth, food along with pay pension, widow pension and compensation for surgery who have undergone for RCS.

## **2. Methodology**

The study area was selected according to the highest prevalence and annual case detection rate of leprosy in Odisha. In the year 2009–2010, the highest ANCDR was 41.7% of Sonepur district in comparison to another endemic zone of Odisha. During this study, the record of surgery patients reported that 71 had undergone for surgery of six different blocks of Sonepur district. Out of these RCS patients list, only 60 RCS patients were alive and included in this study, which is the universe

**113**

**3. Result**

**3.1 Patients selection**

blocks of this above-said district.

ties of hand and feet independently.

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

three phases like pilot study, main field work-1, and main fieldwork-2.

life were gathered from reconstructive surgery leprosy patients.

from all six blocks of Sonepur district which were hectic.

the varied socio-cultural set-ups where they are living.

sample of this study area. In this work above age 60+ and below 15 year leprosy patients, non-RCS patients in leprosy were excluded. This study was conducted in

In Pilot study, which was conducted for 4 weeks to interact with patients, health staffs like MO, DLO and Paramedical health staffs who were working in leprosy. A semi-structured questionnaire was developed and examined various tools for the assessment of RCS patients. In the first phase of the main fieldwork, data pertaining to the demographic profile of the patients and their household and the quality of

In the second phase of the main fieldwork, data pertaining to social and psychological consequences were gathered from leprosy patients and interaction with their caregivers and family members is carried out. Then a number of case studies with leprosy patients, two rounds of focus group discussion (FGD) with different stakeholders such as, patients, family members, and health staff were collected

Limitation of this study was following the subject participants at their place of residence or was a daunting task as they were dispersed in the wide area of six blocks. To some extent, it became a limitation due to inadequate time and inconvenient traveling to communicate the patients, their respective family members and

All the Reconstructive surgery patients of Sonepur district were selected for the purpose of this study. It was reported that 71 patients had surgery but only 60 could be interviewed and others were migrated/died. All the patients were dispersed in six

**Table 2** represents the effect of RCS among the undergone surgery patients. Deformities were observed in both hand and feet of the registered RCS patients. Before surgery, 48.3% had deformities in their hands and needed full assistance but after surgery, only 18.3% required help from others. Out of 60 RCS patients, 54% had hand deformities but some extent they could manage their work. In the third parameter, after surgery, 96.6% did not need the assistance of anyone. Similarly, in feet deformities only 10% required full assistance after surgery and 93.3% need no assistance. This above table reveals that RCS enables a patient to perform all activi-

*DOI: http://dx.doi.org/10.5772/intechopen.86973*

#### *Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

sample of this study area. In this work above age 60+ and below 15 year leprosy patients, non-RCS patients in leprosy were excluded. This study was conducted in three phases like pilot study, main field work-1, and main fieldwork-2.

In Pilot study, which was conducted for 4 weeks to interact with patients, health staffs like MO, DLO and Paramedical health staffs who were working in leprosy. A semi-structured questionnaire was developed and examined various tools for the assessment of RCS patients. In the first phase of the main fieldwork, data pertaining to the demographic profile of the patients and their household and the quality of life were gathered from reconstructive surgery leprosy patients.

In the second phase of the main fieldwork, data pertaining to social and psychological consequences were gathered from leprosy patients and interaction with their caregivers and family members is carried out. Then a number of case studies with leprosy patients, two rounds of focus group discussion (FGD) with different stakeholders such as, patients, family members, and health staff were collected from all six blocks of Sonepur district which were hectic.

Limitation of this study was following the subject participants at their place of residence or was a daunting task as they were dispersed in the wide area of six blocks. To some extent, it became a limitation due to inadequate time and inconvenient traveling to communicate the patients, their respective family members and the varied socio-cultural set-ups where they are living.

## **3. Result**

*Current Topics in Neglected Tropical Diseases*

**Figure 1.**

**Figure 2.**

*Lepers at Kustha ashram.*

*An IBR of lepers at Sonepur.*

treatment, etc. But no literature is available on patients' perception after surgery. So the intention of this work is to explore the patients' perception regarding post RCS and its consequences. This study is conducted in Sonepur district of Odisha; the LEPRA society office at Sonepur has a rehabilitation center for leprosy patients.

The aim of this study is to assess the patients' socio-psychological condition and

**Figure 2** depicts about the lepers of Kustha Ashram in Sonepur district, Odisha. It has been established in the year 2001 by the Government to facilitate the isolated deformed and disability lepers from society. Government supports the patients to rehabilitate them by supplying footwear, cloth, food along with pay pension, widow

The study area was selected according to the highest prevalence and annual case

detection rate of leprosy in Odisha. In the year 2009–2010, the highest ANCDR was 41.7% of Sonepur district in comparison to another endemic zone of Odisha. During this study, the record of surgery patients reported that 71 had undergone for surgery of six different blocks of Sonepur district. Out of these RCS patients list, only 60 RCS patients were alive and included in this study, which is the universe

They did help me in getting the old patients contacts.

their acceptance in society after reconstructive surgery.

pension and compensation for surgery who have undergone for RCS.

**112**

**2. Methodology**

## **3.1 Patients selection**

All the Reconstructive surgery patients of Sonepur district were selected for the purpose of this study. It was reported that 71 patients had surgery but only 60 could be interviewed and others were migrated/died. All the patients were dispersed in six blocks of this above-said district.

**Table 2** represents the effect of RCS among the undergone surgery patients. Deformities were observed in both hand and feet of the registered RCS patients. Before surgery, 48.3% had deformities in their hands and needed full assistance but after surgery, only 18.3% required help from others. Out of 60 RCS patients, 54% had hand deformities but some extent they could manage their work. In the third parameter, after surgery, 96.6% did not need the assistance of anyone. Similarly, in feet deformities only 10% required full assistance after surgery and 93.3% need no assistance. This above table reveals that RCS enables a patient to perform all activities of hand and feet independently.


#### **Table 2.**

*Quality of life of pre and post RCS patients.*

**Table 3** elaborates on the satisfaction of the patients with society as a whole pre RCS. It gives data about the satisfaction level obtained from family members, friends, relatives, society and their over-all life.

In the case of the family, none of the patients are very satisfied with the acceptance of their family members. Out of 60 patients, 54, i.e., 90%, were partially satisfied with the behavior and acceptance of their family members in pre RCS. Six patients, i.e., 10%, were dissatisfied with their family members pre RCS.

In the case of friends only one, i.e., 1.6% patient found to be very satisfied with the acceptance of his friend before RCS. Forty-nine patients, i.e., 81.6% were partially satisfied by the acceptance of friends. Ten patients, i.e., 16.6% were fully dissatisfied by the behavior of their friends pre RCS.

Only one patient (1.6%) is fully satisfied with the acceptance of relatives before RCS. Eighty percent, i.e., 48 patients out of 60 were partially satisfied with the relatives before RCS, 11 patients, i.e., 18.3% were fully dissatisfied with the behavior of the relatives with them pre RCS.

If we take society as a whole, only one patient, i.e., 1.6% was fully satisfied with the society pre RCS stage. Forty-two patients, i.e., 70% were partially satisfied with the society before RCS. Seventeen patients, i.e., 28.3% were fully dissatisfied with the society before RCS.

The disease is such that no one can be satisfied with overall life. Only one patient, i.e., 1.6% was in spite of the disease fully satisfied with his overall life. Sixteen patients, i.e., 26.6% are partially satisfied with overall life. Forty-three patients, i.e., 71.6% are fully dissatisfied with their overall life.


**115**

**Table 4.**

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

**Table 4** presents the result of Post RCS acceptance and support. Almost 86% of patients are very satisfied with the acceptance of their family, friend, relatives, and society. But 47 (78.3%) patients showed their satisfaction on overall life. After surgery among all the criteria of acceptance, 20% replied they are partially satisfied upon their life which is greater than other cases. In other cases, only 11–13% of patients answered they feel less satisfied. A very negligible percentage of patients have been counted in the dissatisfy column. Thus, **Table 4** shows better result and improvement in the patient's life after reconstructive surgery when

**Table 5** and **Figure 3** depict that after surgery among the 60 reconstructive surgery patients only 20 (33.3%) patients had changed their profession as they still had little loss of sensation in hand and feet and so they preferred a profession which needed less movement and it was flexible for them to adopt. After surgery patients were suggested to take rest for 6 months and go to work only after complete healing. So only 40 patients could prefer their same old profession presently people believe that absence of deformity is the only concern of society for an individual to lead his/her life as a normal being. Many research work on leprosy stated that deformity is creating a social stigma against this disease in society. So after surgery, it is proved that "no deformity is equal to no stigma." RCS has given a great effort to reduce the pressure of social stigma

**Figure 4** describes the economic status of the patients after and before the RCS. Before RCS 35% of patients' income was below Rs. 1000 but however, in post RCS it is found that only 21.6% of patients income was below Rs. 1000. Similarly, the income of 60% was between Rs. 1000 and 5000 in Pre RCS but it increased to 66.6% in post RCS. 8.3% of patients' had earned Rs. 6000–10,000 which was only 5% in patients before surgery. In post RCS only 3.3% patient could get above Rs. 10,000 but in Pre-surgery, no one was capable to earn this much amount. So it is concluded that RCS has helped the patients to earn more than what they earned before RCS and the economic status of the patients has improved to a great level. The highest number of patients are earning a minimum amount between Rs. 1000 and 5000 because most of the patients belong to the

**satisfied (%)**

5 How satisfied about your overall life 47 (78.30) 12 (20) 1 (1.60)

**Partially satisfied (%)**

51 (85) 8 (13.30) 1 (1.60)

52 (86.60) 6 (10) 2 (3.30)

52 (86.60) 6 (10) 2 (3.30)

51 (85) 7 (11.60) 2 (3.30)

**Dissatisfied (%)**

*DOI: http://dx.doi.org/10.5772/intechopen.86973*

compared to **Table 3**.

from society.

**3.2 Economic status**

farming profession.

Post RCS

**Sl. no. Parameters Very** 

acceptance by family

acceptance by friends

acceptance by relatives

acceptance by society

*Impact of RCS on social relationship and support of post RCS patients.*

1 How satisfied are you with your

2 How satisfied are you with your

3 How satisfied are you with your

4 How satisfied are you with your

**Table 3.**

*Quality of social relation and support of pre RCS patients.*

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

**Table 4** presents the result of Post RCS acceptance and support. Almost 86% of patients are very satisfied with the acceptance of their family, friend, relatives, and society. But 47 (78.3%) patients showed their satisfaction on overall life. After surgery among all the criteria of acceptance, 20% replied they are partially satisfied upon their life which is greater than other cases. In other cases, only 11–13% of patients answered they feel less satisfied. A very negligible percentage of patients have been counted in the dissatisfy column. Thus, **Table 4** shows better result and improvement in the patient's life after reconstructive surgery when compared to **Table 3**.

**Table 5** and **Figure 3** depict that after surgery among the 60 reconstructive surgery patients only 20 (33.3%) patients had changed their profession as they still had little loss of sensation in hand and feet and so they preferred a profession which needed less movement and it was flexible for them to adopt. After surgery patients were suggested to take rest for 6 months and go to work only after complete healing. So only 40 patients could prefer their same old profession presently people believe that absence of deformity is the only concern of society for an individual to lead his/her life as a normal being. Many research work on leprosy stated that deformity is creating a social stigma against this disease in society. So after surgery, it is proved that "no deformity is equal to no stigma." RCS has given a great effort to reduce the pressure of social stigma from society.

#### **3.2 Economic status**

*Current Topics in Neglected Tropical Diseases*

friends, relatives, society and their over-all life.

*Quality of life of pre and post RCS patients.*

dissatisfied by the behavior of their friends pre RCS.

of the relatives with them pre RCS.

with the society before RCS.

**Table 3** elaborates on the satisfaction of the patients with society as a whole pre RCS. It gives data about the satisfaction level obtained from family members,

**Deformities occurred body organ Parameters Before (%) After (%)** Hand Full assistance 29 (48.3) 11 (18.3)

Feet Full assistance 12 (20) 06 (10)

Some assistance 54 (90) 18 (30) No assistance 20 (33.3) 58 (96.6)

Some assistance 19 (31.6) 04 (6.6) No assistance 54 (90) 56 (93.3)

In the case of the family, none of the patients are very satisfied with the acceptance of their family members. Out of 60 patients, 54, i.e., 90%, were partially satisfied with the behavior and acceptance of their family members in pre RCS. Six

In the case of friends only one, i.e., 1.6% patient found to be very satisfied with the acceptance of his friend before RCS. Forty-nine patients, i.e., 81.6% were partially satisfied by the acceptance of friends. Ten patients, i.e., 16.6% were fully

Only one patient (1.6%) is fully satisfied with the acceptance of relatives before RCS. Eighty percent, i.e., 48 patients out of 60 were partially satisfied with the relatives before RCS, 11 patients, i.e., 18.3% were fully dissatisfied with the behavior

If we take society as a whole, only one patient, i.e., 1.6% was fully satisfied with

**(%)**

**Partially satisfied (%)**

0 (0) 54 (90) 6 (10)

1 (1.60) 49(81.60) 10 (16.6)

1 (1.60) 48 (80) 11 (18.3)

1 (1.60) 42 (70) 17 (28.3)

**Dissatisfied (%)**

the society pre RCS stage. Forty-two patients, i.e., 70% were partially satisfied with the society before RCS. Seventeen patients, i.e., 28.3% were fully dissatisfied

The disease is such that no one can be satisfied with overall life. Only one patient, i.e., 1.6% was in spite of the disease fully satisfied with his overall life. Sixteen patients, i.e., 26.6% are partially satisfied with overall life. Forty-three

5 How satisfied about your overall life 1 (1.60) 16 (26.6) 43 (71.6)

patients, i.e., 71.6% are fully dissatisfied with their overall life.

**Sl. no Parameters Very satisfied** 

acceptance by family

acceptance by friends

acceptance by relatives

acceptance by society

1 How satisfied are you with your

2 How satisfied are you with your

3 How satisfied are you with your

4 How satisfied are you with your

*Quality of social relation and support of pre RCS patients.*

patients, i.e., 10%, were dissatisfied with their family members pre RCS.

**114**

**Table 3.**

Pre RCS

**Table 2.**

**Figure 4** describes the economic status of the patients after and before the RCS. Before RCS 35% of patients' income was below Rs. 1000 but however, in post RCS it is found that only 21.6% of patients income was below Rs. 1000. Similarly, the income of 60% was between Rs. 1000 and 5000 in Pre RCS but it increased to 66.6% in post RCS. 8.3% of patients' had earned Rs. 6000–10,000 which was only 5% in patients before surgery. In post RCS only 3.3% patient could get above Rs. 10,000 but in Pre-surgery, no one was capable to earn this much amount. So it is concluded that RCS has helped the patients to earn more than what they earned before RCS and the economic status of the patients has improved to a great level. The highest number of patients are earning a minimum amount between Rs. 1000 and 5000 because most of the patients belong to the farming profession.


#### **Table 4.**

*Impact of RCS on social relationship and support of post RCS patients.*

#### *Current Topics in Neglected Tropical Diseases*


**Table 5.**

*Incidence of RCS patients changing profession.*

**Figure 3.** *Changed profession in post RCS.*

**Figure 4.** *Economic profile.*

## **4. Discussion**

The purpose of the study is to assess the quality of life for those who had undergone RCS with leprosy. The overall result shows that after reconstructive surgery performance of patients have improved due to better mobility of limbs. 96.6% reported that they do not need others to support to meet their expectations. This result is comparable with the similar study of John in which he explained more than 50% patients said that after correction of deformities they could meet their

**117**

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

expectations [10], subjectively assessed, 85% and above were satisfied with their social acceptance with respect to family, relatives, and peers, 13% were partially satisfied and 2% were dissatisfied. These results were corroborating with that of Ebenezer et al.'s study [11]. Similarly, Virmond and Palande stated that RCS has undergone patients' income and acceptance which was reduced to a great extent before disease, again regained. Therefore, they opined that early correction of disabilities prevents dehabilitation [12]. When it was discussed in regard to depression and anxiety of leprosy patients, a psychological study of Ramanathan et al. explained that 25 randomly selected patients undergoing corrective surgical procedure for their disabilities and deformities, high anxiety and depression levels were found preoperatively and in contrast to the result of the present study only 40% could meet their expectations [13]. After interaction with all the RCS patients, it was observed that they followed the doctor's advice for 6 months complete rest and avoided to lift heavy materials. This had helped them for complete recovery and no complications for which the satisfaction level is high 85%. If we discuss about the gender difference in the impact of leprosy; women with leprosy are more vulnerable than men in respect to all aspects like relationship, acceptance and workability. This study observed that 6.6% women were separated, rejected and avoided by their family and community members. These similar findings were observed in Mull et al. study which was conducted in Karachi. They reported that the proportion of diagnosed male with leprosy were high than female. They observed that women were not forewarned about MDT regimens and it might have been due to practice of purdah and lack of female health worker [14]. In addition, Naik et al. explained that women faced more domestic violence and deprived from personal contacts with others [15]. Similarly, Carol et al. and Janna et al. reported that women are more vulnerable because they were derived from personal contact with their family as well as community. Even they observed that women were more sufferers from rejection and isolation [16, 17]. Besides, according to psychological domain, Oliveira and Romanelli reported that female leprosy patients tend to neglected themselves, that the fear of abandonment, stigma and they are concerned about their appearance [18]. In addition Mankar et al. measured the QOL for the sexes and found it relatively higher impact of leprosy on women than the control leprosy patients [19]. Thus deformity and disabilities among patients made them to deprive from work activities. Another study of Natasja et al. explained that comparison of SLASA scale assessment on limitation of activities of the patients after 1 year it revealed that those had reconstructive surgery showed a significant improvement in their activities but there was no significant change found among them who declined RCS. Thus, concluded that reconstructive surgery has a beneficial effect on the functioning of limbs [20]. This present study result showed that due to the avoidance of further difficulties in their life only 33% changed their profession. It was earlier stated by Dharmendra that, "the beggar problem is a difficult one in India as the money and institutions needed for them are not available" [21]. Thus, it has been reported that in many studies: begging is the ideal profession of leprosy patients. One of these papers of Harvinder and Brakel, they specified that isolation and prohibition of the patients make them incapable to do any profession for their livelihood. Therefore, they choose to beg as their profession and stick to it till the end of their life [22]. If we consider the income of surgery patients before RCS they faced problem due to their deformities and lost strength to continue their work. Thus their socioeconomic status is categorized as per SES scale of Kuppuswamy into five groups. Sixty percent were earning Rs. 1000–5000 and no one was getting 10,000. After surgery 3.3% are earning more than 10,000 and <5 people were in <1000 and rest was in the bracket of Rs. 6000–10,000 with SES scale. This suggests that RCS brought an economic upliftment, which gave them social status and security. (\$ = 70.30/− and £ = 90.39).

*DOI: http://dx.doi.org/10.5772/intechopen.86973*

#### *Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

expectations [10], subjectively assessed, 85% and above were satisfied with their social acceptance with respect to family, relatives, and peers, 13% were partially satisfied and 2% were dissatisfied. These results were corroborating with that of Ebenezer et al.'s study [11]. Similarly, Virmond and Palande stated that RCS has undergone patients' income and acceptance which was reduced to a great extent before disease, again regained. Therefore, they opined that early correction of disabilities prevents dehabilitation [12]. When it was discussed in regard to depression and anxiety of leprosy patients, a psychological study of Ramanathan et al. explained that 25 randomly selected patients undergoing corrective surgical procedure for their disabilities and deformities, high anxiety and depression levels were found preoperatively and in contrast to the result of the present study only 40% could meet their expectations [13]. After interaction with all the RCS patients, it was observed that they followed the doctor's advice for 6 months complete rest and avoided to lift heavy materials. This had helped them for complete recovery and no complications for which the satisfaction level is high 85%. If we discuss about the gender difference in the impact of leprosy; women with leprosy are more vulnerable than men in respect to all aspects like relationship, acceptance and workability. This study observed that 6.6% women were separated, rejected and avoided by their family and community members. These similar findings were observed in Mull et al. study which was conducted in Karachi. They reported that the proportion of diagnosed male with leprosy were high than female. They observed that women were not forewarned about MDT regimens and it might have been due to practice of purdah and lack of female health worker [14]. In addition, Naik et al. explained that women faced more domestic violence and deprived from personal contacts with others [15]. Similarly, Carol et al. and Janna et al. reported that women are more vulnerable because they were derived from personal contact with their family as well as community. Even they observed that women were more sufferers from rejection and isolation [16, 17]. Besides, according to psychological domain, Oliveira and Romanelli reported that female leprosy patients tend to neglected themselves, that the fear of abandonment, stigma and they are concerned about their appearance [18]. In addition Mankar et al. measured the QOL for the sexes and found it relatively higher impact of leprosy on women than the control leprosy patients [19]. Thus deformity and disabilities among patients made them to deprive from work activities. Another study of Natasja et al. explained that comparison of SLASA scale assessment on limitation of activities of the patients after 1 year it revealed that those had reconstructive surgery showed a significant improvement in their activities but there was no significant change found among them who declined RCS. Thus, concluded that reconstructive surgery has a beneficial effect on the functioning of limbs [20]. This present study result showed that due to the avoidance of further difficulties in their life only 33% changed their profession. It was earlier stated by Dharmendra that, "the beggar problem is a difficult one in India as the money and institutions needed for them are not available" [21]. Thus, it has been reported that in many studies: begging is the ideal profession of leprosy patients. One of these papers of Harvinder and Brakel, they specified that isolation and prohibition of the patients make them incapable to do any profession for their livelihood. Therefore, they choose to beg as their profession and stick to it till the end of their life [22]. If we consider the income of surgery patients before RCS they faced problem due to their deformities and lost strength to continue their work. Thus their socioeconomic status is categorized as per SES scale of Kuppuswamy into five groups. Sixty percent were earning Rs. 1000–5000 and no one was getting 10,000. After surgery 3.3% are earning more than 10,000 and <5 people were in <1000 and rest was in the bracket of Rs. 6000–10,000 with SES scale. This suggests that RCS brought an economic upliftment, which gave them social status and security. (\$ = 70.30/− and £ = 90.39).

*Current Topics in Neglected Tropical Diseases*

*Incidence of RCS patients changing profession.*

**Table 5.**

**Figure 3.**

*Changed profession in post RCS.*

**Serial number Change in occupation Number of patients (%)**

The purpose of the study is to assess the quality of life for those who had undergone RCS with leprosy. The overall result shows that after reconstructive surgery performance of patients have improved due to better mobility of limbs. 96.6% reported that they do not need others to support to meet their expectations. This result is comparable with the similar study of John in which he explained more than 50% patients said that after correction of deformities they could meet their

 Farming 6 (10) Business 3 (5) Job 4 (6.6) Others 7 (11.7) Total 20 (33.3)

**116**

**4. Discussion**

**Figure 4.** *Economic profile.*

## **5. Conclusion**

Reconstructive surgery (RCS) had revealed the visible impact among the leprosy patients. This study concludes that patients who had undergone RCS have improved quality of life when compare to their past experience before RCS and with those who are still concealing the deformities and disabilities without availing the RCS facilities due to social stigma. It may be noted that in case of leprosy the self-stigma dominates among all leprosy patients. This needs a proper counseling at family level to understand the disease, its curability nature and that is not a hereditary by nature. This study reports that post RCS acceptance by society and the level of quality of overall life has improved to 78.3% from 1.6% in pre-surgery. Similarly, the performance of limbs in post RCS is very satisfactory, i.e., 96.6% in hand and 93.3% in foot mobility.

The findings of this present work will hopefully could motivate the hidden and concealed cases to come forward and avail the free surgery RCS in designated centers. In turn, the surgeons would also be encouraged for their great effort which could reduce social stigma among these leprosy patients. It will also help to dispel the misconception about disease and create awareness about diagnosis and treatment. Thus, RCS reduces the social stigma in a significant way.

## **Acknowledgements**

The authors gratefully acknowledge the LEPRA society, District Leprosy Officer (DLO) and Para Medical staffs who facilitated the research, RCS leprosy patients who shared their stories, my co-workers and the interpreter Manoj Bhoi.

## **Conflict of interest**

The authors declare that there is no conflict of interest regarding the publication of this chapter.

**119**

India

**Author details**

Debajanee Lenka1,2\*, Amarendra Mohapatra2

provided the original work is properly cited.

\*Address all correspondence to: r.debajanee@gmail.com

1 Department of Anthropology, Utkal University, Bhubaneswar, Odisha, India

2 ICMR-Regional Medical Research Centre, Bhubaneswar Dist-Khurda, Odisha, India

3 Department of Nephrology, SCB Medical College and Hospital, Cuttack, Odisha,

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium,

and Chittaranjan Kar3

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

*DOI: http://dx.doi.org/10.5772/intechopen.86973*

## **Abbreviations**


*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

## **Author details**

*Current Topics in Neglected Tropical Diseases*

Reconstructive surgery (RCS) had revealed the visible impact among the leprosy patients. This study concludes that patients who had undergone RCS have improved quality of life when compare to their past experience before RCS and with those who are still concealing the deformities and disabilities without availing the RCS facilities due to social stigma. It may be noted that in case of leprosy the self-stigma dominates among all leprosy patients. This needs a proper counseling at family level to understand the disease, its curability nature and that is not a hereditary by nature. This study reports that post RCS acceptance by society and the level of quality of overall life has improved to 78.3% from 1.6% in pre-surgery. Similarly, the performance of limbs in post RCS is very satisfactory, i.e., 96.6% in hand and 93.3%

The findings of this present work will hopefully could motivate the hidden and concealed cases to come forward and avail the free surgery RCS in designated centers. In turn, the surgeons would also be encouraged for their great effort which could reduce social stigma among these leprosy patients. It will also help to dispel the misconception about disease and create awareness about diagnosis and treat-

The authors gratefully acknowledge the LEPRA society, District Leprosy Officer (DLO) and Para Medical staffs who facilitated the research, RCS leprosy patients

The authors declare that there is no conflict of interest regarding the publication

who shared their stories, my co-workers and the interpreter Manoj Bhoi.

ment. Thus, RCS reduces the social stigma in a significant way.

**5. Conclusion**

in foot mobility.

**Acknowledgements**

**Conflict of interest**

of this chapter.

**Abbreviations**

RCS reconstructive surgery

*M. leprae Mycobacterium leprae*

MO Medical Officer

DLO District Leprosy Officer

ANCDR annual case detection rate PPP public private partnership NGO non-government organization

NLEP National Leprosy Elimination Programme

QOL quality of life

**118**

Debajanee Lenka1,2\*, Amarendra Mohapatra2 and Chittaranjan Kar3

1 Department of Anthropology, Utkal University, Bhubaneswar, Odisha, India

2 ICMR-Regional Medical Research Centre, Bhubaneswar Dist-Khurda, Odisha, India

3 Department of Nephrology, SCB Medical College and Hospital, Cuttack, Odisha, India

\*Address all correspondence to: r.debajanee@gmail.com

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

## **References**

[1] Ramachandra AG. Reconstructive surgery as preparation for rehabilitation. Leprosy in India. 1969;**41**:210-211

[2] Srinivas H. "Prevention of Disabilities in Patients with Leprosy": A Practical Guide. Geneva: World Health Organization; 1963

[3] Dawn AG, Lee PP. Patients expectations for medical and surgical care: A review of the literature and applications to ophthalmology. Survey of Ophthalmology. 2004;**49**:513-524

[4] Araujo MG. Hansen no Brasil. Revista da Sociedade Brasileira de Medicina Tropical. 2003;**36**:373-382

[5] GHA H. Investigations concerning the etiology of leprosy. Norsk Magazin for Lagevidenkaben. 1874;**4**:1-88

[6] Mareno CMC, Enders BC, Simpson CA. Evaluation of leprosy skills: Opinion of doctors and nurses of family health teams. Revista Brasileira de Enfermagem. 2008;**61**(Br):671-675

[7] Ministry of Health, Secretariat of Health Surveillance. Department of Epidemiological Surveillance. Health Surveillance: Epidemiological Situation of Leprosy in Brazil. Brazil: Ministry of Health; 2008

[8] Baialadri KS. The stigma of leprosy: Report of a group experience with people with HIV. Hansenologia Internationalis. 2007;**32**:27-36

[9] NLEP Progress Report on 2013-2014. Available from: www.nlep.org.in

[10] Annamma S, John D, Kumar V, Rao PSS. Patient's perceptions of reconstructive surgery in leprosy. Leprosy Review. 2005;**76**:48-54

[11] Ebenezer M, Rao K, Partheebaranjan S. Factors affecting functional outcome of surgical correction of claw hand in leprosy. Indian Journal of Leprosy. 2012;**84**:259-264

[12] Palande DD, Marcos V. Social rehabilitation and surgery in leprosy. Hansenologia Internationalis. 2002;**27**(2):99-104

[13] Ramanathan U, Malaviya GN, Jain N, Husain S. Psycholosocial aspects of deformed leprosy patients undergoing surgical correction. Leprosy Review. 1991;**62**:402-409

[14] Mull JD et al. Culture and compliance among leprosy patients in Pakistan. Social Science and Medicine. 1989;**29**(7):799-811

[15] Naik SS et al. Problems and needs of women leprosy patients in Bombay and Goa—A preliminary report. Indian Journal of Leprosy. 1991;**63**(2):213-222

[16] Carol V et al. Double jeopardy: Women and leprosy in India. World Health Statistics Quarterly. Rapport Trimestriel de Statistiques Sanitaires Mondiales. 1996;**49**:120-126

[17] Dijkstra Janna IR, Van Brakel WH, Van Elteren M. Gender and leprosy related stigma in endemic areas: A systematic review. Leprosy Review. 2017;**88**:419-440

[18] Romaneilli O. The effects of leprosy on men and women: A gender study. Cadernos de Saúde Pública. 1998;**14**:51-60

[19] Mankar MJ, Joshi SM, Velankar DH, et al. A comparative study of the quality of life, knowledge, attitude and belief about leprosy disease among leprosy patients and community members in shantivan leprosy—Rehabilitation center, Nere, Maharastra, India. Journal of Global Infectious Diseases. 2011;**3**:378-382

**121**

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal*

*DOI: http://dx.doi.org/10.5772/intechopen.86973*

[20] Van veen Natasja HJ, Hemo Dinabandhu A, Bowers Robert L, David P, et al. Evaluation of activity limitation and social participation, and effects of reconstructive surgery in people with disability due to leprosy: A prospective cohort study. Disability and Rehabilitation. 2011;**33**(8):667-674

[21] Dharmendra. Social aspects of leprosy. Leprosy in India.

[22] Harvinder K, Van Wim B. Is beggary a chosen profession among people living in a leprosy colony. Leprosy Review.

1954;**26**:113-120

2002;**73**:334-345

*Impact of Reconstructive Surgery (RCS) among Leprosy Patients: A Social Appraisal DOI: http://dx.doi.org/10.5772/intechopen.86973*

[20] Van veen Natasja HJ, Hemo Dinabandhu A, Bowers Robert L, David P, et al. Evaluation of activity limitation and social participation, and effects of reconstructive surgery in people with disability due to leprosy: A prospective cohort study. Disability and Rehabilitation. 2011;**33**(8):667-674

[21] Dharmendra. Social aspects of leprosy. Leprosy in India. 1954;**26**:113-120

[22] Harvinder K, Van Wim B. Is beggary a chosen profession among people living in a leprosy colony. Leprosy Review. 2002;**73**:334-345

**120**

*Current Topics in Neglected Tropical Diseases*

[1] Ramachandra AG. Reconstructive surgery as preparation for rehabilitation. surgical correction of claw hand in leprosy. Indian Journal of Leprosy.

[12] Palande DD, Marcos V. Social rehabilitation and surgery in leprosy. Hansenologia Internationalis.

[13] Ramanathan U, Malaviya GN, Jain N, Husain S. Psycholosocial aspects of deformed leprosy patients undergoing surgical correction. Leprosy Review.

compliance among leprosy patients in Pakistan. Social Science and Medicine.

[15] Naik SS et al. Problems and needs of women leprosy patients in Bombay and Goa—A preliminary report. Indian Journal of Leprosy. 1991;**63**(2):213-222

[16] Carol V et al. Double jeopardy: Women and leprosy in India. World Health Statistics Quarterly. Rapport Trimestriel de Statistiques Sanitaires

[17] Dijkstra Janna IR, Van Brakel WH, Van Elteren M. Gender and leprosy related stigma in endemic areas: A systematic review. Leprosy Review.

Mondiales. 1996;**49**:120-126

[18] Romaneilli O. The effects of leprosy on men and women: A gender study. Cadernos de Saúde Pública.

[19] Mankar MJ, Joshi SM, Velankar DH, et al. A comparative study of the quality of life, knowledge, attitude and belief about leprosy disease among leprosy patients and community members in shantivan leprosy—Rehabilitation center, Nere, Maharastra, India. Journal of Global Infectious Diseases.

2017;**88**:419-440

1998;**14**:51-60

2011;**3**:378-382

[14] Mull JD et al. Culture and

2012;**84**:259-264

2002;**27**(2):99-104

1991;**62**:402-409

1989;**29**(7):799-811

Disabilities in Patients with Leprosy": A Practical Guide. Geneva: World Health

expectations for medical and surgical care: A review of the literature and applications to ophthalmology. Survey of Ophthalmology. 2004;**49**:513-524

[4] Araujo MG. Hansen no Brasil. Revista da Sociedade Brasileira de Medicina

[5] GHA H. Investigations concerning the etiology of leprosy. Norsk Magazin for Lagevidenkaben. 1874;**4**:1-88

[6] Mareno CMC, Enders BC, Simpson CA. Evaluation of leprosy skills:

Opinion of doctors and nurses of family health teams. Revista Brasileira de Enfermagem. 2008;**61**(Br):671-675

[7] Ministry of Health, Secretariat of Health Surveillance. Department of Epidemiological Surveillance. Health Surveillance: Epidemiological Situation of Leprosy in Brazil. Brazil: Ministry of

[8] Baialadri KS. The stigma of leprosy: Report of a group experience with people with HIV. Hansenologia Internationalis. 2007;**32**:27-36

Available from: www.nlep.org.in

[11] Ebenezer M, Rao K, Partheebaranjan S. Factors affecting functional outcome of

[10] Annamma S, John D, Kumar V, Rao PSS. Patient's perceptions of reconstructive surgery in leprosy. Leprosy Review. 2005;**76**:48-54

[9] NLEP Progress Report on 2013-2014.

Health; 2008

Leprosy in India. 1969;**41**:210-211

[2] Srinivas H. "Prevention of

[3] Dawn AG, Lee PP. Patients

Tropical. 2003;**36**:373-382

Organization; 1963

**References**

**123**

**1. Introduction**

**Chapter 8**

*Issiaka Soulama*

**Abstract**

Neglected Tropical Diseases

Pathogen and Human Genetic

Interaction in the Genomic Era:

Opportunities for (Sub-Saharan)

African Scientists to Get on Board

The worldwide prevalence of the neglected tropical diseases (NTD) shows the diseases are affecting more than 1 billion. The burden of the Neglected tropical diseases cost to developing, the burden of the diseases cost to developing economies billions of dollars every year. The genomic research in the last decades providing a full sequence (some currently in the sequencing pipeline) of genomes of many of the organisms including those which are responsible of neglected tropical diseases, may help in the management of such diseases. With the human genome being sequenced, the understanding of the genomic interaction between human and NTD pathogen enable scientists to develop new strategies to prevent and treat these devastating diseases. In this context of genomic era, African scientists may interestingly play an insider role in order to be part of the history of the elimination of these diseases. However, a critical mass of African scientists in genomic area constitutes the first step toward this long way in struggle against NTD. Although the challenge is enormous, it is very important to recognize that some African countries and institutions are fully committed to develop and strengthen African leadership in genomic area, while some are conspicuously absent from this debate. Joining African competences and leadership through collaborative activities and moving forward remains the next

challenge to really impact the control and elimination of the NTD.

The neglected tropical diseases (NTDs) are known as a group of bacterial, parasitic, viral, and fungal infections strongly associated with poverty with an increase overlapping in tropical areas. They occurred particularly in areas affected by socioeconomic progress and unfortunately combined with other factors such as limited access to safe water and sanitation, chronic hunger, and also in areas where vector-transmitted diseases are more frequent. According to the World Bank Study, Sub-Saharan Africa population represents the major focus for the NTDs [1] and as mentioned from the 2010 Global Burden of Disease Study, NTDs accounted

**Keywords:** NTD, genomic, scientists, elimination, Africa

## **Chapter 8**

Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era: Opportunities for (Sub-Saharan) African Scientists to Get on Board

*Issiaka Soulama*

## **Abstract**

The worldwide prevalence of the neglected tropical diseases (NTD) shows the diseases are affecting more than 1 billion. The burden of the Neglected tropical diseases cost to developing, the burden of the diseases cost to developing economies billions of dollars every year. The genomic research in the last decades providing a full sequence (some currently in the sequencing pipeline) of genomes of many of the organisms including those which are responsible of neglected tropical diseases, may help in the management of such diseases. With the human genome being sequenced, the understanding of the genomic interaction between human and NTD pathogen enable scientists to develop new strategies to prevent and treat these devastating diseases. In this context of genomic era, African scientists may interestingly play an insider role in order to be part of the history of the elimination of these diseases. However, a critical mass of African scientists in genomic area constitutes the first step toward this long way in struggle against NTD. Although the challenge is enormous, it is very important to recognize that some African countries and institutions are fully committed to develop and strengthen African leadership in genomic area, while some are conspicuously absent from this debate. Joining African competences and leadership through collaborative activities and moving forward remains the next challenge to really impact the control and elimination of the NTD.

**Keywords:** NTD, genomic, scientists, elimination, Africa

## **1. Introduction**

The neglected tropical diseases (NTDs) are known as a group of bacterial, parasitic, viral, and fungal infections strongly associated with poverty with an increase overlapping in tropical areas. They occurred particularly in areas affected by socioeconomic progress and unfortunately combined with other factors such as limited access to safe water and sanitation, chronic hunger, and also in areas where vector-transmitted diseases are more frequent. According to the World Bank Study, Sub-Saharan Africa population represents the major focus for the NTDs [1] and as mentioned from the 2010 Global Burden of Disease Study, NTDs accounted

for more than 26 million [2]. Most of the NTDs are well known as ancient diseases resulting in humanity concerns for centuries [3]. From the 2020 Roadmap, 20 NTDs were identified as following: Buruli ulcer, Chagas disease, cysticercosis/ taeniasis, dengue fever, dracunculiasis (guinea worm disease), echinococcosis, food-borne trematodiasis, human African trypanosomiasis (HAT) (sleeping sickness), leishmaniasis, leprosy, lymphatic filariasis, onchocerciasis (river blindness), rabies, schistosomiasis, soil-transmitted helminthiasis (ascariasis, hookworm, and trichuriasis), trachoma, and yaws [4]. The World Health Organization classified the NTDs into two mains groups: in one hand the preventive chemotherapy and transmission control (PCT) NTDs including prominently lymphatic filariasis, onchocerciasis, schistosomiasis, and soil-transmitted helminthiasis while the innovative and intensified disease management (IDM) on the other hand is constitute with Buruli ulcer, Chagas disease, human African trypanosomiasis, and leishmaniasis disease that are currently lack suitable tools for large scale use [5]. NTDs remain as a public health problem for poor populations living in tropical environments and difficult-to-access areas with more than 40% of impacted people living in the WHO African Region. The challenge is as much as important to justify the development of a specific program at WHO AFRO which mission is to provide technical orientation, support and guidance to Member States in the WHO African region. The development of genomic represents an opportunity that can contribute to the accelerated prevention, control, elimination, and eradication of NTDs and neglected zoonoses.

## **2. Geographical distribution and global burden of the NTDs**

The concept, the burden, and the geographical repartition of the NTDs (**Figure 1**) justify the need of a global advocacy including the health policy-makers and ultimately the opportunity for tackling the NTDs with the same urgency and the commitment as for HIV/AIDS, tuberculosis, and malaria [6].

As previously well described by Hotez [6–8], the NTDs are characterized by the following important elements:


**125**

**Figure 1.**

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era…*

Regarding the chronicity of the disease but also as diseases afflicting humankind for centuries, NTDs are considered as "non-emerging" disease in contrast to emerg-

Moreover, based on the previous studies, it is well documented that there is a geographic overlap among seven of the NTDs (ascariasis, trichuriasis, hookworm infection, schistosomiasis, LF, onchocerciasis, and trachoma). This is especially observed in sub-Saharan Africa where those NTDs present a very high prevalence. However, the overlapping of the NTDs in this part of the world allow to target these conditions simultaneously by combining the drugs in an integrated concept so named "rapid-impact package" [7, 9], as the drugs can be easily and quickly deployed by a contingent of community drug distributors. The rapid-impact package strategy if well implemented should ultimately contribute to the interruption of

*Global intensity map of EReNTD regions of endemicity. Data are from the World Health Organization (2013).*

Although the NTDs are known to severely impact everyone, the diseases affect

*Biological and physiological factors* of w*omen and girls* lead to increased vulnerability of this specific category to particular pathologies—for example, female genital schistosomiasis and severe helminth-related anemia in pregnant women.

*Socio-cultural factors* are suspected in increasing risk to NTDs. A specific notified example is the water-based domestic activities carried out in two-third Sub-Saharan Africa by women or girls which increases risk of diseases such as schistosomiasis, whereas child-care and caregiving increases risk of trachoma and blindness. In fact, research suggested that women account for 80% of disability-adjusted life years

NTDs that cause disfigurement and disability (such as lymphatic filariasis) can have a disproportionately negative impact on employability and marriageability

ing infections such as HIV/AIDS, SARS, and avian influenza.

the diseases transmission such LF, onchocerciasis, and trachoma [9].

women and girls disproportionately for the following reasons:

**3. Impact of NTDs on public health**

linked to trachoma-related blindness.

*DOI: http://dx.doi.org/10.5772/intechopen.89982*

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era… DOI: http://dx.doi.org/10.5772/intechopen.89982*

**Figure 1.**

*Current Topics in Neglected Tropical Diseases*

for more than 26 million [2]. Most of the NTDs are well known as ancient diseases resulting in humanity concerns for centuries [3]. From the 2020 Roadmap, 20 NTDs were identified as following: Buruli ulcer, Chagas disease, cysticercosis/ taeniasis, dengue fever, dracunculiasis (guinea worm disease), echinococcosis, food-borne trematodiasis, human African trypanosomiasis (HAT) (sleeping sickness), leishmaniasis, leprosy, lymphatic filariasis, onchocerciasis (river blindness), rabies, schistosomiasis, soil-transmitted helminthiasis (ascariasis, hookworm, and trichuriasis), trachoma, and yaws [4]. The World Health Organization classified the NTDs into two mains groups: in one hand the preventive chemotherapy and transmission control (PCT) NTDs including prominently lymphatic filariasis, onchocerciasis, schistosomiasis, and soil-transmitted helminthiasis while the innovative and intensified disease management (IDM) on the other hand is constitute with Buruli ulcer, Chagas disease, human African trypanosomiasis, and leishmaniasis disease that are currently lack suitable tools for large scale use [5]. NTDs remain as a public health problem for poor populations living in tropical environments and difficult-to-access areas with more than 40% of impacted people living in the WHO African Region. The challenge is as much as important to justify the development of a specific program at WHO AFRO which mission is to provide technical orientation, support and guidance to Member States in the WHO African region. The development of genomic represents an opportunity that can contribute to the accelerated prevention, control, elimination, and eradication of NTDs and neglected zoonoses.

**2. Geographical distribution and global burden of the NTDs**

the commitment as for HIV/AIDS, tuberculosis, and malaria [6].

following important elements:

as the component.

figure of US\$1.25 per day.

The concept, the burden, and the geographical repartition of the NTDs (**Figure 1**) justify the need of a global advocacy including the health policy-makers and ultimately the opportunity for tackling the NTDs with the same urgency and

As previously well described by Hotez [6–8], the NTDs are characterized by the

Africa, Asia, and Latin America and the Caribbean where the poverty is known

• Described as the most common infections of people living in sub-Saharan

• NTDs affect about 1.4 billion people who live below the World Bank poverty

• Unfortunately, the NTDs result in chronic infections lasting years or even decades resulting in a great impact on the affected people family revenue.

and then the billions of affected people cannot escape poverty.

that are psychologically devastating and result in social stigma.

high-morbidity but low-mortality conditions.

• The chronicity of The NTDs affect child growth and intellectual and cognitive developments, impair pregnancy outcomes, and decrease worker productivity

• Among the consequence, the NTDs also cause blindness and disfigurement

• This high level of morbidity, economic impairment, and stigma does not necessarily translate into large numbers of deaths; overall, the NTDs cause

**124**

*Global intensity map of EReNTD regions of endemicity. Data are from the World Health Organization (2013).*

Regarding the chronicity of the disease but also as diseases afflicting humankind for centuries, NTDs are considered as "non-emerging" disease in contrast to emerging infections such as HIV/AIDS, SARS, and avian influenza.

Moreover, based on the previous studies, it is well documented that there is a geographic overlap among seven of the NTDs (ascariasis, trichuriasis, hookworm infection, schistosomiasis, LF, onchocerciasis, and trachoma). This is especially observed in sub-Saharan Africa where those NTDs present a very high prevalence. However, the overlapping of the NTDs in this part of the world allow to target these conditions simultaneously by combining the drugs in an integrated concept so named "rapid-impact package" [7, 9], as the drugs can be easily and quickly deployed by a contingent of community drug distributors. The rapid-impact package strategy if well implemented should ultimately contribute to the interruption of the diseases transmission such LF, onchocerciasis, and trachoma [9].

### **3. Impact of NTDs on public health**

Although the NTDs are known to severely impact everyone, the diseases affect women and girls disproportionately for the following reasons:

*Biological and physiological factors* of w*omen and girls* lead to increased vulnerability of this specific category to particular pathologies—for example, female genital schistosomiasis and severe helminth-related anemia in pregnant women.

*Socio-cultural factors* are suspected in increasing risk to NTDs. A specific notified example is the water-based domestic activities carried out in two-third Sub-Saharan Africa by women or girls which increases risk of diseases such as schistosomiasis, whereas child-care and caregiving increases risk of trachoma and blindness. In fact, research suggested that women account for 80% of disability-adjusted life years linked to trachoma-related blindness.

NTDs that cause disfigurement and disability (such as lymphatic filariasis) can have a disproportionately negative impact on employability and marriageability

**Figure 2.** *A woman washing dishes in a canal. Image credit Anouk Gouvras.*

of affected women, making them dependent on family members and potentially leading to stigmatization and social exclusion.

Indirect impact of NTDs can also disproportionately affect women and girls as caregivers, having to give up their jobs or drop out of school in order to take care of a sick family member (**Figure 2**).

## **4. Global mobilization and role of scientific commitment against neglected tropical disease**

The worldwide burden of NTDs lead to a global mobilization with a development of a strategic work plan 2014–2020, which has been developed with the following objectives: scale up access to NTD-related interventions; enhance planning for results, resource mobilization, and financial sustainability of national NTD programs; strengthen advocacy, coordination, and national ownership; and enhance monitoring, evaluation, surveillance, and research [10] (WHO, 2012): Roadmap: accelerating work to overcome the global impact of neglected tropical diseases.

The 2020 roadmap against NTD recommend further research including the need for newer and safer drugs, vector control, personal hygiene, and the development of vaccines. In the implementation of the roadmap, there are several initiative including control programs or research initiatives bringing their resources and competences. Then, a more macro approach may be necessary to promote greater effectiveness in addressing the underlining social, human health, zoonotic, and environmental challenges to prevent morbidity, and mortality from these diseases. One such approach that is growing worldwide in recognition is the "One Health" initiative, a commitment of interdisciplinary and multistakeholder involved locally, nationally, and globally in areas of human and animal health, agriculture, and the environment [1–15]. However, these one health approaches should be sensitive

**127**

**Figure 3.**

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era…*

to resource-poor settings and should leverage partners and broader global public

*Proposed United Nations "One Health" framework. FAO, Food and Agriculture Organization; OIE, World Organization for Animal Health; TDR, WHO Special Programme for Research and Training in Tropical Diseases; UNDP, United Nations Development Programme; UNEP, United Nations Environment Programme; UNFPA, United Nations Population Fund; UNICEP, United Nations Children's Fund; WHO, World Health* 

*Organization; WMO, World Meteorological Organization.*

Although there are many NGOs and partners committed in NTDs control, scientific commitment is quite negligible in designing strategies and implementation. However, very few of them are from Africa where most of the NTD are present. Although African scientist's mobilization and commitment are well practical in some of the NTD control, very few inputs is observed in the genetic and genomic area. Indeed, the control and the elimination of certain NTD will be rapidly and successfully carried out with the contribution of the understanding of human and pathogen genomic interaction. Interestingly genomic constitute the new insight generating from genetic studies that can provide explanations and may even allow predictions to be made, in the context of a range of biological problems including the field of inherited human disorders. The development of the genetic in the last decade leads ineluctably to the "genomic" era. Then, importantly, with the improvement of sequencing technologies and the enormous reduction in the cost of sequencing, biologists are facing with a "data avalanche." The development of the next generation whole exome or genome sequencing may bring to the scientific community large possibility of tools to elucidate genetic perturbation occurring in many diseases including the neglected tropical diseases. Consequently, genomic data analysis may also be useful for the dissection of the genetic mechanisms underlying complex polygenic diseases or in understanding how some modifiers genes can influence the age of onset or clinical severity of a given disease

*DOI: http://dx.doi.org/10.5772/intechopen.89982*

health networks as it is represented in **Figure 3**.

#### *Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era… DOI: http://dx.doi.org/10.5772/intechopen.89982*

to resource-poor settings and should leverage partners and broader global public health networks as it is represented in **Figure 3**.

Although there are many NGOs and partners committed in NTDs control, scientific commitment is quite negligible in designing strategies and implementation. However, very few of them are from Africa where most of the NTD are present. Although African scientist's mobilization and commitment are well practical in some of the NTD control, very few inputs is observed in the genetic and genomic area. Indeed, the control and the elimination of certain NTD will be rapidly and successfully carried out with the contribution of the understanding of human and pathogen genomic interaction. Interestingly genomic constitute the new insight generating from genetic studies that can provide explanations and may even allow predictions to be made, in the context of a range of biological problems including the field of inherited human disorders. The development of the genetic in the last decade leads ineluctably to the "genomic" era. Then, importantly, with the improvement of sequencing technologies and the enormous reduction in the cost of sequencing, biologists are facing with a "data avalanche." The development of the next generation whole exome or genome sequencing may bring to the scientific community large possibility of tools to elucidate genetic perturbation occurring in many diseases including the neglected tropical diseases. Consequently, genomic data analysis may also be useful for the dissection of the genetic mechanisms underlying complex polygenic diseases or in understanding how some modifiers genes can influence the age of onset or clinical severity of a given disease

#### **Figure 3.**

*Current Topics in Neglected Tropical Diseases*

of affected women, making them dependent on family members and potentially

**4. Global mobilization and role of scientific commitment against** 

Indirect impact of NTDs can also disproportionately affect women and girls as caregivers, having to give up their jobs or drop out of school in order to take care of

The worldwide burden of NTDs lead to a global mobilization with a development of a strategic work plan 2014–2020, which has been developed with the following objectives: scale up access to NTD-related interventions; enhance

planning for results, resource mobilization, and financial sustainability of national NTD programs; strengthen advocacy, coordination, and national ownership; and enhance monitoring, evaluation, surveillance, and research [10] (WHO, 2012): Roadmap: accelerating work to overcome the global impact of neglected tropical

The 2020 roadmap against NTD recommend further research including the need for newer and safer drugs, vector control, personal hygiene, and the development of vaccines. In the implementation of the roadmap, there are several initiative including control programs or research initiatives bringing their resources and competences. Then, a more macro approach may be necessary to promote greater effectiveness in addressing the underlining social, human health, zoonotic, and environmental challenges to prevent morbidity, and mortality from these diseases. One such approach that is growing worldwide in recognition is the "One Health" initiative, a commitment of interdisciplinary and multistakeholder involved locally, nationally, and globally in areas of human and animal health, agriculture, and the environment [1–15]. However, these one health approaches should be sensitive

leading to stigmatization and social exclusion.

*A woman washing dishes in a canal. Image credit Anouk Gouvras.*

a sick family member (**Figure 2**).

**neglected tropical disease**

**126**

diseases.

**Figure 2.**

*Proposed United Nations "One Health" framework. FAO, Food and Agriculture Organization; OIE, World Organization for Animal Health; TDR, WHO Special Programme for Research and Training in Tropical Diseases; UNDP, United Nations Development Programme; UNEP, United Nations Environment Programme; UNFPA, United Nations Population Fund; UNICEP, United Nations Children's Fund; WHO, World Health Organization; WMO, World Meteorological Organization.*

entity. Interestingly, while we are acquiring new research capabilities, we are also encountering new problems with the analysis of genomic data such as genomic data presentation, format, sharing, and reanalysis.

## **5. Programs and strategies ongoing in the field of genomic supporting the eradication of neglected tropical disease**

The number of emerging infectious diseases is increasing annually despite the numerous of effort going on. In parallel to the wide incidence of the infectious disease including neglected tropical disease, characterizing novel or re-emerging infections is aided by the availability of pathogen genomes. This also helps to develop new approaches. Indeed, recently an *in silico* approach for discovering new filarial drug targets was developed in which comparative sequence analysis and functional genomics data from the related model nematode *Caenorhabditis elegans* are combined into subtractive filters that can be used to identify potentially essential nematode genes and generate a pool of pre-validated candidate targets [15–17]. Different techniques such as the RNA interference (RNAi) experiments and other functional studies serve as potential genomic tools to examine gene function from NTDs pathogen. Interestingly, sequencing of pathogen genomes, can contribute to describing nearly every aspect of transmission dynamics when some of the following information, date, location, clinical manifestation, or others data regarding the samples origin are including. The analyses of these data can positively affect the clinical management of the disease or the public health practice such as policies for surveillance, prevention, and treatment. The combination of genomic and epidemiological data represents consequently a perfect tool to address answers to epidemiological questions and reduce incidence and prevalence. How can genomic approaches support neglected tropical disease eradication particularly by analogy with how conservation genomics is supporting efforts to prevent extinctions. They are genomic approaches of capacity building programs in Africa as described through the next paragraphs that are contributing to reach this goal demonstrating the opportunity behind this cutting-edge method for African scientists.

## **6. Genomic training programs in Africa**

Genomics remain one excellent component in the long way of NTD control and elimination. In order to tackle neglected tropical disease and move forward with elimination steps, the development of competent resources constitute one of the important challenge particularly in Sub-Saharan Africa, where the NTD present the highest prevalence. There are few institute in Africa taking the opportunity of genomic era that are focused and committed to the development of scientists with excellent competence and capacity in genomic. The global effort required to apply genomic science and associated technologies to improve the understanding of health and disease in diverse populations is undeniable todays. In fact, identify individuals and populations who are at risk for developing specific diseases such as NTDs, and to better understand underlying genetic and environmental contributions to risk could greatly contribute in finding sustainable responses. And the large diversity of African continent that constitute genetic complexity represents an enormous opportunity to utilize such approaches to benefit African populations and to inform global health.

**129**

of well-trained scientists.

initiative called AGMT.

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era…*

Africa mainly in Nigeria, Ghana and recently introduced in Mali.

matics; capacity for biobanking; and coordination and networking.

As a continental consortium, today H3Africa constitutes as one of the most important supporting institutions to African researchers and also contributing to the establishment of effective collaborations among African researchers. Through these different collaborations, the consortium is able to generate specific and large data set in relation to the global health. The consortium is supporting different initiative in Africa such the West African Center of Excellence for Global Health Bioinformatics Research Training in Mali, the Eastern Africa Network for Bioinformatics Training (EANBIT), the Collaborative African Genomics Network" (CAfGEN) and the Integrated approach to the identification of genetic determi-

nants of susceptibility to trypanosomiasis (TrypanoGEN) in Uganda.

H3Africa is also collaborating with the African Center of Excellence for Genomics of Infectious Diseases (ACEGID) at Redeemer's University in partnership with academic, clinical, and research institutions in Nigeria, Sierra-Leone, and Senegal to develop African research capacity in genomics by building a critical mass

In order to boost the genomic concept and interest African scientists to this revolutionary scientific area, a group of stakeholders from the H3BiotNet (Pan African Bioinformatics Network for H3Africa) and the African Society of Human Genetic launched in 2016 in Dakar in Senegal, the African Genomic Medicine Training

The most involved institution in the training of human resources in genomic are Pan African based in South Africa and Nord Africa. Few are developing in west

The Human Heredity and Health in Africa (H3Africa) constitute one of the largest consortium with the objectives to facilitate fundamental research into diseases on the African continent, while also developing infrastructure, resources, training, and ethical guidelines to support a sustainable African research enterprise. By his constitution, H3Africa is led by African scientists, for the African people. Today, H3Africa initiative consists of 48 African projects that include different data set from population-based genomic studies of common, non-communicable disorders such as heart and renal disease to communicable diseases such as tuberculosis. Those studies are designed by African scientists with the objective to identify hereditary and environmental contributions to health and disease. While H3Africa is working mainly in developing African scientist's capacity, the consortium is also committed to support many crucial capacity building elements, such as ethical, legal, and social implications research; training and capacity building for bioinfor-

*DOI: http://dx.doi.org/10.5772/intechopen.89982*

**6.1 H3Africa**

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era… DOI: http://dx.doi.org/10.5772/intechopen.89982*

The most involved institution in the training of human resources in genomic are Pan African based in South Africa and Nord Africa. Few are developing in west Africa mainly in Nigeria, Ghana and recently introduced in Mali.

### **6.1 H3Africa**

*Current Topics in Neglected Tropical Diseases*

presentation, format, sharing, and reanalysis.

**the eradication of neglected tropical disease**

entity. Interestingly, while we are acquiring new research capabilities, we are also encountering new problems with the analysis of genomic data such as genomic data

**5. Programs and strategies ongoing in the field of genomic supporting** 

The number of emerging infectious diseases is increasing annually despite the numerous of effort going on. In parallel to the wide incidence of the infectious disease including neglected tropical disease, characterizing novel or re-emerging infections is aided by the availability of pathogen genomes. This also helps to develop new approaches. Indeed, recently an *in silico* approach for discovering new filarial drug targets was developed in which comparative sequence analysis and functional genomics data from the related model nematode *Caenorhabditis elegans* are combined into subtractive filters that can be used to identify potentially essential nematode genes and generate a pool of pre-validated candidate targets [15–17]. Different techniques such as the RNA interference (RNAi) experiments and other functional studies serve as potential genomic tools to examine gene function from NTDs pathogen. Interestingly, sequencing of pathogen genomes, can contribute to describing nearly every aspect of transmission dynamics when some of the following information, date, location, clinical manifestation, or others data regarding the samples origin are including. The analyses of these data can positively affect the clinical management of the disease or the public health practice such as policies for surveillance, prevention, and treatment. The combination of genomic and epidemiological data represents consequently a perfect tool to address answers to epidemiological questions and reduce incidence and prevalence. How can genomic approaches support neglected tropical disease eradication particularly by analogy with how conservation genomics is supporting efforts to prevent extinctions. They are genomic approaches of capacity building programs in Africa as described through the next paragraphs that are contributing to reach this goal demonstrating the opportunity behind this cutting-edge method

Genomics remain one excellent component in the long way of NTD control and elimination. In order to tackle neglected tropical disease and move forward with elimination steps, the development of competent resources constitute one of the important challenge particularly in Sub-Saharan Africa, where the NTD present the highest prevalence. There are few institute in Africa taking the opportunity of genomic era that are focused and committed to the development of scientists with excellent competence and capacity in genomic. The global effort required to apply genomic science and associated technologies to improve the understanding of health and disease in diverse populations is undeniable todays. In fact, identify individuals and populations who are at risk for developing specific diseases such as NTDs, and to better understand underlying genetic and environmental contributions to risk could greatly contribute in finding sustainable responses. And the large diversity of African continent that constitute genetic complexity represents an enormous opportunity to utilize such approaches to benefit African populations

**128**

for African scientists.

and to inform global health.

**6. Genomic training programs in Africa**

The Human Heredity and Health in Africa (H3Africa) constitute one of the largest consortium with the objectives to facilitate fundamental research into diseases on the African continent, while also developing infrastructure, resources, training, and ethical guidelines to support a sustainable African research enterprise. By his constitution, H3Africa is led by African scientists, for the African people. Today, H3Africa initiative consists of 48 African projects that include different data set from population-based genomic studies of common, non-communicable disorders such as heart and renal disease to communicable diseases such as tuberculosis. Those studies are designed by African scientists with the objective to identify hereditary and environmental contributions to health and disease. While H3Africa is working mainly in developing African scientist's capacity, the consortium is also committed to support many crucial capacity building elements, such as ethical, legal, and social implications research; training and capacity building for bioinformatics; capacity for biobanking; and coordination and networking.

As a continental consortium, today H3Africa constitutes as one of the most important supporting institutions to African researchers and also contributing to the establishment of effective collaborations among African researchers. Through these different collaborations, the consortium is able to generate specific and large data set in relation to the global health. The consortium is supporting different initiative in Africa such the West African Center of Excellence for Global Health Bioinformatics Research Training in Mali, the Eastern Africa Network for Bioinformatics Training (EANBIT), the Collaborative African Genomics Network" (CAfGEN) and the Integrated approach to the identification of genetic determinants of susceptibility to trypanosomiasis (TrypanoGEN) in Uganda.

H3Africa is also collaborating with the African Center of Excellence for Genomics of Infectious Diseases (ACEGID) at Redeemer's University in partnership with academic, clinical, and research institutions in Nigeria, Sierra-Leone, and Senegal to develop African research capacity in genomics by building a critical mass of well-trained scientists.

In order to boost the genomic concept and interest African scientists to this revolutionary scientific area, a group of stakeholders from the H3BiotNet (Pan African Bioinformatics Network for H3Africa) and the African Society of Human Genetic launched in 2016 in Dakar in Senegal, the African Genomic Medicine Training initiative called AGMT.

The African Genomic Medicine Training Initiative (AGMT) was initiated by a Working Group made up of volunteers from across the globe with a clear vision to "*increased effectiveness of Health Care in Africa through the application of Genomic Medicine".* This initiative includes several mission:

Design and develop Genomic Medicine training for African-based healthcare professionals.

Develop competency-based Genomic Medicine curriculum for healthcare workers in Africa.

Develop and implement flagship training courses based on the collaboratively developed curricula.

The first iteration was run in 2017 with 19 classrooms in 11 countries, 1 online class, and 225 students registered.

The second iteration is running from March to July 2019 as a professional development course.

The purpose of this Professional Development Course is to provide genomics and genetics education to nurses based in Africa emphasizing the practical application of content into learners' current settings and roles. In addition to contributing increasing knowledge in the genetics of African health issues, this second iteration of the AGMT initiative aim to develop skills in Genetic counseling, Community engagement/Ethical conduct in research, and patient care and development of health promotion material. Therefore, this course seeks to support improved Genetics & Genomics knowledge, attitudes and skills for genomic medicine in Africa.

### **6.2 Genomics Africa**

Genomic Africa is a training program organized by the Kwazulu-Natal Research Innovation and Sequencing Platform (KRISP) with the aim of "*Bringing genomic technologies to Africa to fight our great challenges: loss of biodiversity, famine, migration and diseases*."

As a Flagship program of the South African Medical Research Council (SAMRC), KRIS develops collaboration with DIPLOMICS ASSOCIATED LABORATORIES which is a South African Research Infrastructure Roadmap (SARIR) program of the Department of Science and Technology (DST). To reach his mention, different training programs are developed and run each year at KRISP Genomics Africa targeting several diseases including tropical neglected disease as well as the development of new technologies to help in Africa including Microbiome and Metagenomics Sequencing with Illumina and Nanopore.

There are others genomic training initiatives developed and running in Africa, and even not targeting specifically neglected tropical disease are greatly contributing to human resources strengthening. By helping strengthen human capacity in genomic area, they may help answering how African scientists are prepared to tackle the NTDs in the context of genomic era.

#### **6.3 DELGEME**

The Developing Excellence in Leadership and Genetics Training for Malaria Elimination in sub-Saharan Africa (DELGEME) is a new training programme sponsored by the Wellcome Trust Developing Excellence in Leadership, Training and Science Africa (DELTAS Africa) initiative in partnership with the Department of International Development (DFID) and the Alliance for

**131**

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era…*

Accelerating Excellence in Science in Africa (AESA). Led by the University of Science Techniques and Technologies of Bamako Mali (USTTB), this genetic and genomic training program is partnering with the Medical Research

Council (MRC) Unit in The Gambia, The United States Army Medical Research Directorate (USAMRD-K)/KEMRI Kenya, The Noguchi Memorial Institute for Medical Research (NMIMR)-Navrongo Health Research Centre, Ghana, The National Institute of Medical Research (NIMR) Tanzania, Université des Sciences de la Santé of Libreville, Gabon, Benhard-Nocht Institute for Tropical Medicine (BNITM) Germany/Kumasi Centre for Collaborative

Research (KCCR) Ghana, and the University of Oxford/Wellcome Trust Sanger Institute UK. In collaboration with MalariaGEN (www.malariagen.net) and the Plasmodium Diversity Network, The DELGEME program aims to enrich the pool of African Scientists working in African institutions with relevant expertise to leverage big genetics and genomics data in the drive for malaria elimina-

To train, retain, and develop Graduates, Doctoral, and Post-doctoral fellows on

To develop programs to enhance the understanding and dissemination of genetic

Short-term training will be delivered for various trainees including public health

Formal long-term curricula (big data science, biostatistics, health informatics, genomics, cell biology, molecular biology, and bioinformatics) will be designed and implemented with contribution and oversight from a wide range of local and

officers on genetics, clinical studies, ethics, grant writing, grant management,

*DOI: http://dx.doi.org/10.5772/intechopen.89982*

tion in sub-Saharan Africa.

leadership development, etc.

In order to reach this objective DELGEME aim to:

International Faculty and relevant advisory boards.

genomics and bioinformatics across malaria endemic countries.

data relevant to malaria interventions and eradication program.

**6.4 Others genomic training institutions/programs in Africa**

17 countries, 16 of which are African.

Interestingly from last year, genomic education is progressively taking off in Africa. Indeed, many genomic training programs at the countries or regional level are entering in operational phase. Many of them are mainly supported by H3ABioNet which organizes a variety of high quality courses and training events covering various aspects of bioinformatics from general introductory topics to more specialized ones such Next Generation Sequencing and Genome Wide Association Studies analyses. Indeed, H3ABioNet is comprised of 28 Nodes distributed among

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era… DOI: http://dx.doi.org/10.5772/intechopen.89982*

Accelerating Excellence in Science in Africa (AESA). Led by the University of Science Techniques and Technologies of Bamako Mali (USTTB), this genetic and genomic training program is partnering with the Medical Research Council (MRC) Unit in The Gambia, The United States Army Medical Research Directorate (USAMRD-K)/KEMRI Kenya, The Noguchi Memorial Institute for Medical Research (NMIMR)-Navrongo Health Research Centre, Ghana, The National Institute of Medical Research (NIMR) Tanzania, Université des Sciences de la Santé of Libreville, Gabon, Benhard-Nocht Institute for Tropical Medicine (BNITM) Germany/Kumasi Centre for Collaborative Research (KCCR) Ghana, and the University of Oxford/Wellcome Trust Sanger Institute UK. In collaboration with MalariaGEN (www.malariagen.net) and the Plasmodium Diversity Network, The DELGEME program aims to enrich the pool of African Scientists working in African institutions with relevant expertise to leverage big genetics and genomics data in the drive for malaria elimination in sub-Saharan Africa.

In order to reach this objective DELGEME aim to:

To train, retain, and develop Graduates, Doctoral, and Post-doctoral fellows on genomics and bioinformatics across malaria endemic countries.

To develop programs to enhance the understanding and dissemination of genetic data relevant to malaria interventions and eradication program.

Short-term training will be delivered for various trainees including public health officers on genetics, clinical studies, ethics, grant writing, grant management, leadership development, etc.

Formal long-term curricula (big data science, biostatistics, health informatics, genomics, cell biology, molecular biology, and bioinformatics) will be designed and implemented with contribution and oversight from a wide range of local and International Faculty and relevant advisory boards.

#### **6.4 Others genomic training institutions/programs in Africa**

Interestingly from last year, genomic education is progressively taking off in Africa. Indeed, many genomic training programs at the countries or regional level are entering in operational phase. Many of them are mainly supported by H3ABioNet which organizes a variety of high quality courses and training events covering various aspects of bioinformatics from general introductory topics to more specialized ones such Next Generation Sequencing and Genome Wide Association Studies analyses. Indeed, H3ABioNet is comprised of 28 Nodes distributed among 17 countries, 16 of which are African.

*Current Topics in Neglected Tropical Diseases*

professionals.

ers in Africa.

developed curricula.

development course.

**6.2 Genomics Africa**

*and diseases*."

**6.3 DELGEME**

class, and 225 students registered.

*Medicine".* This initiative includes several mission:

The African Genomic Medicine Training Initiative (AGMT) was initiated by a Working Group made up of volunteers from across the globe with a clear vision to "*increased effectiveness of Health Care in Africa through the application of Genomic* 

Design and develop Genomic Medicine training for African-based healthcare

Develop competency-based Genomic Medicine curriculum for healthcare work-

Develop and implement flagship training courses based on the collaboratively

The first iteration was run in 2017 with 19 classrooms in 11 countries, 1 online

The second iteration is running from March to July 2019 as a professional

The purpose of this Professional Development Course is to provide genomics and genetics education to nurses based in Africa emphasizing the practical application of content into learners' current settings and roles. In addition to contributing increasing knowledge in the genetics of African health issues, this second iteration of the AGMT initiative aim to develop skills in Genetic counseling, Community engagement/Ethical conduct in research, and patient care and development of health promotion material. Therefore, this course seeks to support improved Genetics &

Genomic Africa is a training program organized by the Kwazulu-Natal Research Innovation and Sequencing Platform (KRISP) with the aim of "*Bringing genomic technologies to Africa to fight our great challenges: loss of biodiversity, famine, migration* 

Genomics knowledge, attitudes and skills for genomic medicine in Africa.

As a Flagship program of the South African Medical Research Council (SAMRC), KRIS develops collaboration with DIPLOMICS ASSOCIATED LABORATORIES which is a South African Research Infrastructure Roadmap (SARIR) program of the Department of Science and Technology (DST). To reach his mention, different training programs are developed and run each year at KRISP Genomics Africa targeting several diseases including tropical neglected disease as well as the development of new technologies to help in Africa including Microbiome

There are others genomic training initiatives developed and running in Africa, and even not targeting specifically neglected tropical disease are greatly contributing to human resources strengthening. By helping strengthen human capacity in genomic area, they may help answering how African scientists are

The Developing Excellence in Leadership and Genetics Training for Malaria Elimination in sub-Saharan Africa (DELGEME) is a new training programme sponsored by the Wellcome Trust Developing Excellence in Leadership, Training and Science Africa (DELTAS Africa) initiative in partnership with the Department of International Development (DFID) and the Alliance for

and Metagenomics Sequencing with Illumina and Nanopore.

prepared to tackle the NTDs in the context of genomic era.

**130**

## **7. Conclusions**

Genomic is a rapidly evolving medical field relying on technological advances and with a direct effect on disease treatment, control, and elimination including such neglected tropical disease. Nevertheless, in Africa, the introduction, the development, and the application of genomic are variously appreciated. Interestingly, there are institutions greatly introduced in genomic era and they are working to spread the knowledge to the rest of the African continent as pioneers with support from some North European and American institutions. Hence, even there is still limit critical mass of African scientists well trained in this new scientific domain to contribute to the diseases control and elimination in general and neglected tropical disease in particular, there is room of hope since there is positive signal within the continent. However, this provided the strongest possible argument in favor of working together in south-south collaboration way on steps to bridge this genomic divide. The challenge exists but still remain surmountable.

## **Conflict of interest**

There is no conflict of interest.

## **Author details**

Issiaka Soulama National Centre for Training and Malaria Research, Ouagadougou, Burkina Faso

\*Address all correspondence to: soulamacnrfp@gmail.com

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

**133**

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era…*

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*DOI: http://dx.doi.org/10.5772/intechopen.89982*

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[2] Hotez PJ, Alvarado M, Basáñez MG, Bolliger I, Bourne R, Boussinesq M, et al. The global burden of disease study 2010: Interpretation and implications for the neglected tropical diseases. PLoS Neglected Tropical Diseases.

[3] Chan M. Ten Years in Public Health, 2007-2017: Report. Geneva: World

[4] Centers for Disease Control and Prevention Neglected Tropical Diseases. 2017. Available from: https://www.cdc. gov/globalhealth/ntd/diseases/index.

[5] Rosenberg M, Utzinger J, Addiss DG.

[6] Hotez PJ, Molyneux DH, Fenwick A, Kumaresan J, Ehrlich Sachs S, Sachs JD, et al. Control of neglected tropical diseases. New England Journal of Medicine. 2007;**357**:1018-1027

Fenwick A, Ottesen E, Ehrlich Sachs S, Sachs JD. Incorporating a rapid-impact

[7] Hotez PJ, Molyneux DH,

package for neglected tropical diseases with programs for HIV/ AIDS, tuberculosis, and malaria. PLoS

[8] Hotez PJ. The neglected tropical diseases and their devastating health and economic impact on the member nations of the Organization of the

Medicine. 2006;**3**:e102

2009;**3**(8):e412

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2014;**8**(7):e2865

Health Organization; 2017

html [Accessed: 15 June 2017]

Preventive chemotherapy versus innovative and intensified disease Management in Neglected Tropical Diseases: A distinction whose shelf life has expired. PLoS Neglected Tropical Diseases. 2016;**10**(4):e0004521

*Neglected Tropical Diseases Pathogen and Human Genetic Interaction in the Genomic Era… DOI: http://dx.doi.org/10.5772/intechopen.89982*

## **References**

*Current Topics in Neglected Tropical Diseases*

**7. Conclusions**

**Conflict of interest**

There is no conflict of interest.

**132**

**Author details**

Issiaka Soulama

National Centre for Training and Malaria Research, Ouagadougou, Burkina Faso

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium,

Genomic is a rapidly evolving medical field relying on technological advances and with a direct effect on disease treatment, control, and elimination including such neglected tropical disease. Nevertheless, in Africa, the introduction, the development, and the application of genomic are variously appreciated. Interestingly, there are institutions greatly introduced in genomic era and they are working to spread the knowledge to the rest of the African continent as pioneers with support from some North European and American institutions. Hence, even there is still limit critical mass of African scientists well trained in this new scientific domain to contribute to the diseases control and elimination in general and neglected tropical disease in particular, there is room of hope since there is positive signal within the continent. However, this provided the strongest possible argument in favor of working together in south-south collaboration way on steps to bridge this genomic

\*Address all correspondence to: soulamacnrfp@gmail.com

provided the original work is properly cited.

divide. The challenge exists but still remain surmountable.

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[2] Hotez PJ, Alvarado M, Basáñez MG, Bolliger I, Bourne R, Boussinesq M, et al. The global burden of disease study 2010: Interpretation and implications for the neglected tropical diseases. PLoS Neglected Tropical Diseases. 2014;**8**(7):e2865

[3] Chan M. Ten Years in Public Health, 2007-2017: Report. Geneva: World Health Organization; 2017

[4] Centers for Disease Control and Prevention Neglected Tropical Diseases. 2017. Available from: https://www.cdc. gov/globalhealth/ntd/diseases/index. html [Accessed: 15 June 2017]

[5] Rosenberg M, Utzinger J, Addiss DG. Preventive chemotherapy versus innovative and intensified disease Management in Neglected Tropical Diseases: A distinction whose shelf life has expired. PLoS Neglected Tropical Diseases. 2016;**10**(4):e0004521

[6] Hotez PJ, Molyneux DH, Fenwick A, Kumaresan J, Ehrlich Sachs S, Sachs JD, et al. Control of neglected tropical diseases. New England Journal of Medicine. 2007;**357**:1018-1027

[7] Hotez PJ, Molyneux DH, Fenwick A, Ottesen E, Ehrlich Sachs S, Sachs JD. Incorporating a rapid-impact package for neglected tropical diseases with programs for HIV/ AIDS, tuberculosis, and malaria. PLoS Medicine. 2006;**3**:e102

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Islamic Conference. PLoS Neglected Tropical Diseases. 2009;**3**:e539

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**135**

**Figure 1.**

*Taxonomy of* leishmania *family [1].*

**Chapter 9**

*Tonay Inceboz*

epidemiology, ecology

**1. Introduction**

(**Figure 1**, **Table 1**).

**Abstract**

Leishmaniasis

Epidemiology and Ecology of

Leishmaniasis is the third most important vector-borne disease after malaria and lymphatic filariasis. It is common disease in all over the world. The vector for leishmaniasis is *Phlebotomus* and there have found around 20 different types of this vector. There are different clinical forms under the name of leishmaniasis such as kala-azar, dum-dum fever, white leprosy, espundia, pian bois, chiclero's ulcer, uta. Environmental factors leading to climate changes and global warming are major risk factors for the spreading of the disease. *Leishmania* spp. to prevent the spread of the definitive host and intermediate hosts is difficult compared to *Plasmodium* spp. Therefore; leishmaniasis disease will retain its importance for many years.

**Keywords:** leishmaniasis, neglected tropical diseases, vector-borne disease,

This fact is mainly due to the presence of many different species of *leishmania*, its vectors and hosts in different parts of the world. More than 20 pathologic species of *leishmania* and over 30 species of *Phlebotomus*—the vector- are known worldwide

On the other hand, deterioration of the eco-systems by human beings also

Leishmaniasis has four clinical forms. These are cutaneous leishmaniasis (CL, local—LCL or diffuse—DCL), mucocutaneous leishmaniasis (MCL), visceral leishmaniasis (VL), post-kala-azar dermal leishmaniasis (PKDL), (**Table 1**).

contribute to the spread of the disease in the world.

## **Chapter 9**
