**7.4 Stigma and mismanagement of epilepsy in Sudan**

Epilepsy in Sudan accounts for 1.6 annual mortality rates and 238.7 disability adjusted life years per 100,000. It is associated with notable stigma and social burdens. Patients with epilepsy suffer a tremendous burden of social discrimination adversely affecting their quality of life [6]. These patients are subject to being denied equal chances to a dignified life following neglect, isolation and lack of national healthcare support.

As studies in Sudan regarding epilepsy are primarily focused on clinical presentation of epilepsy, no in depth illustration or correlation between stigma of epilepsy and the outcome of epilepsy healthcare have been conducted.

However, some of the magnitude of epilepsy stigma in the Sudanese population has been captured across the different age groups of patients with epilepsy in urban and rural areas.

A study conducted by Taha et al. to identify epilepsy related stigma in the Sudanese community and to find correlation between penetrance of the type of stigma on patients through stigma degree scoring, have detected that approximately 16% of both men and women with epilepsy suffer from highly precipitated felt stigma. 12.5% of remaining patients of epilepsy who did not suffer from felt stigma have noted the common belief in their communities of the contagious nature of epilepsy while 56.2% declared their communities believed epilepsy was of demonic possession, 13% mentioned people were afraid from them when they were having seizures in public and hence they do not help them. The Sudanese community surrounding patients with epilepsy also showed poor respect to patients' privacy evident with 77.4% of patients stating that despite not disclosing their condition, it was publicly known. Where expected least, Sudanese communities showed an alarming response to children with epilepsy from their teachers and mentors, as 22% of patients at primary school age mentioned that their teachers treated them badly. Two out of three patients with epilepsy were found to have either courtesy or coaching stigma, which represent enacted stigma of parents and guardians of patients with epilepsy, and this translates into a boosting effect for all forms of stigma being enforced in epileptic patients having their caregivers constantly reminding them of their condition. Patients who stated that their disease hindered their progress in life and those who expressed frustration and stress were found to be more than those who could cope with their condition, and this was significantly

*Challenges Related to Epilepsy Management in Sudan, an Example of Low-Middle Income… DOI: http://dx.doi.org/10.5772/intechopen.93907*

associated with a high seizure frequency. This shows that poor control of seizures inevitably diminishes the ability of patients to conceal their condition, leading to more discrimination and exacerbation of stigma [1].

An important implication of living in a resource-limited country is deficiencies that could be noted across all social services especially healthcare services. Muwada Bashir et al. portrayed a brilliant scope in their study of detecting the quality of life of Sudanese patients with epilepsy under the burden of inequalities of healthcare services, which showed that stigmatization, social discrimination and inadequate health services are major problems that Sudanese patients with epilepsy and their families confront in their daily life. The study concluded that stigma among other factors associated with epilepsy is worsening the burden on both patients and caregivers by crippling their healthcare services accessibility and by increasing efforts of coping with the disease in a society with a culture that is shaped by a low economic status [6].
