**Abstract**

Epilepsy is one of the most common neurological diseases that require long-term healthcare, although it has no racial, gender, or geographical boundaries, certain populations and demographics face different challenges regarding management of epilepsy. These challenges include patients' and communities' misconceptions of epilepsy nature, treatment and outcome, various use of traditional and spiritual therapy in management of epilepsy, stigma of epilepsy, shortage of neurology facilities and specialists and their aggregation in the capital, and collapse of the healthcare system in Sudan. This chapter aims to highlight some of the difficulties facing people with epilepsy in Sudan, an example of a low middle-income country.

**Keywords:** difficulties, seizures, developing countries, Africa, treatment

#### **1. Introduction**

Epilepsy is a global health challenge, one that is responsible for a social and economic burden worldwide, it is estimated to be twice as common in low-income countries than that in the high-income countries, especially in a poor country like Sudan, resulting in unfair treatment, prejudice and stigma [1], and overwhelming decrease in quality of life [2]. People with epilepsy (PWE) in Sudan suffer from a collapsing and deficient health care system, and a community falling behind and lacking enough understanding towards their affliction, with a cultural heritage and misconceptions, and an educational system contributing to make it only that much more difficult for (PWE) to live a normal life, sometimes weighing them down and preventing them from seeking professional medical help altogether. The resultant treatment gab causes a mortality rate dwarfing that of first world countries [3]. On top of that, Sudan is lacking sufficient research and infrastructure to develop satisfying estimates about the situation on the ground, and recent data are scarce [3].

#### **1.1 Sudan: background and population**

Sudan is the third largest country in Africa that occupies almost 728,000 square miles of northeast Africa. It sits along the sub-Saharan crossroads and along the

cost of the red sea that runs through its east-northern borders. In addition to Egypt, Sudan shares borders with six other countries, which are Ethiopia, chad, Libya, Eritrea, Central African Republic, and lastly South Sudan that had its secession from Sudan by July 2011. Sudan is mainly formed of flat plains interspersed by mountain ranges, and due to its immense area, Sudan has different climates and several rivers coursing through the country, mainly the blue and white Niles that join together to form the river Nile in Khartoum the capital city of Sudan.

Although it's an enormously sized country, it is sparsely populated compared to some of the African countries as it has an estimated census of 43 million people, the majority of which are rural in comparison to the urban population that is mainly centered in the capital.

Sudan is vastly enriched with different races, cultures and a blend of Arabic tribes that form the majority of the population and various African tribes and ethnicities, this enrichment may be contributing to its ever astounding cultural diversities and perhaps the fuel to political differences and the rather devastating civil wars that have crushed the country for ages, viciously affecting Sudan in every aspect possible. Sudanese people are still facing major challenges in everyday aspect of life duet to this overwhelming political instability through its history.

#### **1.2 Healthcare system in Sudan**

As a low middle-income country, Sudan is confronted with many brutal challenges, especially in health sector. Some of the challenges encountered are the poor assessment and execution of policies, lack of firm health informatics system, inadequate financial spending, centralized medical services and facilities in Khartoum and urban cities, and insufficient training for postgraduate doctors. To add more to the burden on medical care is the deficiency of preventive medicine application, poor referral system, problematic diaspora of physicians, lack of communities' awareness leading to the fixed stigma and spiritual misconceptions of diseases that are causative of delayed medical seeking behaviors and use of folk medicine. These difficulties robustly affect the quality of health care and specifically the management of chronic diseases as epilepsy.

### **2. Neurology in Sudan**

Neurology practice in Sudan is affected by the weakened health care system, Adult and child neurology is confronted by extreme challenges affecting people with neurological diseases. Up to the year 2005 there were only three practicing neurologists that were delivering medical care for an unconceivable ratio of one neurologist to 12 million people [4]. In addition to the enlarging population, this ratio could be attributed to lack of neurology training programs for postgraduate doctors which has begun in the past 10 years, in addition the shortage of neurology clinics in Sudan as today there are 3 tertiary neurology centers that provide adult neurology services, all of which are located in the capital which only aggravates the problem of the ability to seek neurology consultations and follow-ups especially for patients living outside Khartoum. Other major setbacks are the shortage of neuro-physiologists, neuro-imaging facilities and neuroradiologists and the desperate need for neurology nursing and rehabilitation centers.

#### **3. Epilepsy misconceptions in Sudan**

There is a lot of stigma and misconceptions that befall (PWE) in Sudan, where epilepsy is perceived as demonic possession, Satanic rituals, spells and witchcraft [3], *Challenges Related to Epilepsy Management in Sudan, an Example of Low-Middle Income… DOI: http://dx.doi.org/10.5772/intechopen.93907*

some cultures have superstitions similar to that of Saudi tribes where they consider (PWE) as a presentiment of evil, a manifestation of envy and "Evil Eye" [5], while in some cultures (PWE) are considered a grace and bringers of god-bliss to their families [6]. However, others believe PWE are infectious, mentally ill, impotent and should neither get married nor have a job. Some people consider epilepsy an incurable disease, while others think the condition will pass on its' own so they completely dismiss the therapeutic process as a futile endeavor. Some religious followers would resort to special forms of prayer involving rigorous movements to help alleviate the condition. Such beliefs direct people toward seeking traditional methods and healers, who antagonize demons, introduce herbs, ointments, cautery and prayers as standalone treatment for epilepsy.

A cross sectional study done in Sudan to evaluate the impact of spiritual and traditional believes of care givers on the management of children with epilepsy, it established that 80% of them were educated, one third of study population attributed epilepsy to supernatural causes. More than two thirds acknowledged use of both traditional and spiritual medicine, more than half used different religious methods to treat epilepsy. Almost half of participants believed that religious and or traditional treatment were truly effective in the management of epilepsy, and one third used herbs in the treatment of epilepsy [7].

### **4. Scarce personnel and trained physicians**

In Sudan the number of centers where appropriate investigation tools has increased in the recent years, more cities are constructing new centers for neurology (like Madani neurology center, Aljazeera State), but it's in no way comparable to the increase in patients and the services that need to be provided [8].

Despite the increase in number of medical faculties and doctors, the number of physicians with specialty training in neurology remains lacking. The overall condition of freedom and civil rights in the country along with the increased costs of living, which are all factors contributing to the mass immigration of doctors and other healthcare professionals to seek a respected income that enables them to live a decent life. It is worth mentioning that some doctors in Sudan live off salaries ranging anything from the equivalent of 15 to 300 dollars per month.

### **5. Anti-epileptic drugs (AEDs) in Sudan**

Currently, there are more than 25 licensed AEDs in clinical practice in the developed world, compared to few registered AEDS in Sudan, most of which are old generation AEDs, although older generation medications are still effective even in comparison to newer generation AEDs, the newer generation have less side effects and are more tolerable [9]. Tolerability and adverse effects are a major influence on compliance, and discontinuation of therapy, therefore increasing morbidity and mortality in people with epilepsy.

The use of AEDs is influenced by the pre-existing belief system that pushes people towards traditional herbals and local healers [3], with some believing the medication is useless while others consider s it to be undermining of the more trusted traditional methods. However, among those who would have access to proper medical help, and those who appreciate the need for medication, other factors further affect the treatment gap and challenge adherence to medication. Patients who are seizure free for a long duration or those taking more than one medication may fail to adhere to therapy or omit doses.

Descriptive analysis of cost-benefit for some patients indicates that their concern about the high price of the medication greatly outweighs the need for the drug, and would as a result seek free samples provided by charity organizations, while some patients fail to obtain the drug [10]. Antiepileptic drugs represent a tremendous economic burden on families of patients with epilepsy. The yearly cost of AEDs alone falls not less than 276 US dollars per patient per year, while visitations and consultations along with investigation could reach 51 dollars. Other indirect costs can include travel, for those who live far from the capital, reaching up to 90 dollars. Insurance rarely helps and patients find themselves forced to sell valuable assets like one's cow or shop to cover the expenses, and many find themselves in debt. All of these factors need to be accounted for by the patient and caregivers and affect adherence negatively [11].

#### **6. The collapse of the health care system**

Access to AEDs like other medications in Sudan was subject to variations related to inflation and other complex geopolitical factors, resulting in fluctuating prices in the period from 2009 to 2013 (6 times change in pricing). And while the general market dynamics in the country were somewhat fluctuant, the general indicators of regional macroeconomics have been declining steadily (e.g. GDP in dollars) following factors like change in market policies, conflicts in the south leading to loss of big fractions of the country's' resources, up to the more recent financial crisis in the country in the period 2018-2020, where cash was virtually inaccessible to the public, making all medications into a luxury, and culminating in an event of pharmaceutical scarcity of drugs, despite the government's best efforts to mitigate the impact of the economic situation [12]. Some policies had a relatively positive effect, like price liberalization privatization of the sector. And while reports and studies are yet to fully estimate the on-going catastrophe, the global status of lock-down and quarantine due to the COVID-19 pandemic certainly made it more challenging to get access to medical care or self-management for (PWE) in such a collapsing healthcare system [13].

#### **7. Stigma**

Stigma is the social outspoken or perceived labeling of an individual or a group of people according to true or presumed different characteristics attributed to specific health related and non-health related conditions, rendering these individuals incapable of leading equal lives to their peers in society [14, 15].

Components of stigma include behavioral, emotional and cognitive elements that are portrayed in patients responses or attitudes and their interaction with society [16]. The burden of stigma unfolds in both active and passive manners, those who discriminate and those facing discrimination can inflict stigma after being subjected to it. This gives rise to the different entities of stigma and its effects on different life attributes of stigmatized individuals in society [15].

The manifestations and impact of stigma in the attitude form further branches it into perceived, anticipated, and internalized stigmas, while the social form of stigma includes the enacted or experienced stigma. Perceived stigma describes one's thoughts or self-image perceived through the eyes of those surrounding one's life regarding an acknowledged distinguishing characteristic [16]. Anticipated stigma refers to a presumed inappropriate response in the form of an act of discrimination or labeling in a social setting to one's condition by others. Internalized stigma

denotes self-inflicted discrediting and undermining due to awareness and acknowledgment of one's difference. Experienced or felt stigma refers to consequences of an act of labeling or discrimination that was made intentionally to point out a stigmatizing characteristic [14, 16, 17].
