Erasing the Stigma Associated with Epilepsy at a Global Level

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By Dr. Prince Kazadi and Natalie Aswad Boehm, MBA

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Dr. Prince Kazadi, is a neurologist and founder of ASLEK, a non-profit helping to provide medical and nutritional resources to families and individuals battling epilepsy.

Natalie Aswad Boehm, MBA is a social entrepreneur and the founder of The Defeating Epilepsy Foundation. Natalie has been battling epilepsy for forty years and advocates for better employment and educational opportunities for individuals with epilepsy as well as better healthcare and treatment.  

Epilepsy is a neurological disorder affecting 3.4 million Americans, 65 million people worldwide. Despite the advances in treating epilepsy, many people are still haunted by the stigma that is associated with epilepsy. Levels of stigma and discrimination vary from one country to the other, but the fact that it still exists in the twenty-first century is unacceptable.

In the United States, despite President George H.W. Bush signing the American’s with Disabilities Act into law thirty years ago, many employers and others do what they can to go through loopholes and discriminate against those with pre-existing medical conditions. Over the years many have experienced employers telling them they are not reliable, they are a liability, they are not the kind of employee that they want representing their company. Many advocates have heard these stories from people who are battling epilepsy. Many hide their epilepsy in fear that they will lose their jobs, their medical benefits, and access to their life-saving medication. Others after being let go numerous times due to having epilepsy give up and seek disability assistance. Out of the 3.4 million Americans who battle epilepsy, seventy percent of people with epilepsy can control their seizures with medication. Many people who fall into this seventy percent are being denied gainful employment. This not only affects them, but the American society in general. By fighting for individuals with epilepsy that want gainful employment, they can contribute to their communities and help with economic development. It helps to decrease the dependency of social security disability income for those who can work and gives the government the opportunity to help the thirty percent who are unable to get their seizures to stop.

Despite the evidence we have and the opportunities to make things right, established organizations are not helping those with epilepsy advocate to survive in our society. On the Epilepsy Foundation of America’s site for finding employment, the last update of the information was last updated in 2013 (epilepsy.com, 2013). Many things have changed since and the lack of resources for individuals is frustrating. Educational services for employers to learn about epilepsy to alleviate their fears of hiring someone with epilepsy is not offered. The result is a lost opportunity for so many, a negative result on communities and our economy.

Discrimination due to the stigma does not end in the workforce. Many with epilepsy have faced discrimination from doctors and nurses in the healthcare system. Stories of being accused of faking seizures to assaults taking place are far too common stories. Verbal and emotional abuse by some doctors as well as refusing to show test results to patients is also a quite common act. It is long overdue for the national foundation to address these issues and help to strengthen the community and fight for better healthcare for Americans with epilepsy. Grassroots organizations are now stepping up to address these issues to help find solutions.

One thing that Americans have in their favor compared to other countries globally, is the right to a free education. According to the Code of Federal Regulations, statute 300.101, a free appropriate education must be available to all children between the ages of 3 and 21, including children with disabilities who have been suspended or expelled from school, as provided in statute 300.530(d) (Cornell Law, 2020). The challenge is despite this federal law being in effect, many schools do not put an Individual Education Plan (IEP) into place. What is worse is many parents do not even know what an IEP is or the benefits it provides to their child. IEP’s are needed to protect children with disabilities and make sure they receive the education they are legally entitled to.

Despite laws that have been put into place to protect individuals with epilepsy, a lot more work needs to be done, starting with educating the American society on what epilepsy is and how many can function in society with epilepsy. Grassroots organizations are working together to help those with epilepsy but are limited to their work due to lack of funding. Many want to work with the national foundation to make a difference but are met with silence. Things need to change to unite the community and have organizations work together to create opportunities for people with epilepsy, strengthen their protections, and erase the stigma associated with epilepsy.

Outside of the United States, other countries face greater hardships due to the stigma of epilepsy. In Africa, particularly in the Democratic Republic of Congo, the stigma associated with epilepsy is linked to the lack of knowledge of the disease, resulting in social isolation. Although the social repercussions vary from country to country, the discrimination and stigma that surrounds epilepsy around the world in general and in the Democratic Republic of the Congo are often more difficult to overcome than the crises highlightIn Congo, as everywhere in Africa, people with the disease are victims of prejudice and stigma leading those who suffer from it not to seek to treat their symptoms, thus avoiding being identified as suffering from epilepsy.

Indeed, it is important to remember that epilepsy is a neurological disease and not a mental one, the brain of a person suffering from epilepsy generally works perfectly well between different seizures. These are due to a set of internal factors (disorders of eclectic activity of the brain, etc.) and / or external (accidents, infections, lack of oxygen, vascular disorders, etc.) and are likely to be favored by a large number of people. Stimuli, such as anxiety, stress, boredom, alcohol, loud and sudden noise, blinding or flashing light, and lack of sleep, can trigger and result in someone having a seizure.

We also point out that there are many forms of epilepsy, the diagnosis of an epileptic seizure is based on a scrupulous and precise description of the course of the seizure, only the story of the patient and / or his entourage will allow us to assess the existence of signs suggestive of the disease, such as convulsive movements, loss of consciousness, falls, absences, and automatic gestures.

Our interest in this subject is to be able to address several aspects that can help us in the fight against the stigmatization of epilepsy.

Lack of Knowledge and its Effects

Lack of knowledge of this disease is at the origin of the stigma, the Democratic Republic of Congo being a country where to date does not have an epidemiological profile testifying to the extent of the disease and this has enabled us to demonstrate that the disease is so far poorly understood:

·        Not accepted disease.

·        Inappropriate treatment in several regions.

·        A cause of social stigma / discrimination

Given all the stigma, many Congolese do not always classify epilepsy among neurological diseases, as a result, patients unduly end up in psychiatry, which, no doubt shows that mental health remains a rather wasteland or untapped area. Democratic Republic of Congo.

Due to the lack of knowledge about epilepsy, a questionnaire was prepared for the public. The purpose was to find out what was known about epilepsy. The results of the questionnaire were:

· Transmission through direct contact with the patient, in which the foaming slime emitted during an attack plays an essential role,

· Transmission by linen link where a pregnant woman is the main agent,

· Transmission through witchcraft, in which the wrong people are the agents of the process.

· Transmission by gases emitted by the patient during sphincter relaxation during the crisis.

Because of the lack of education, many still fear that direct contact can result in someone developing epilepsy which is false. Witchcraft is still considered a cause due to not understanding how seizures work and the causes. Because of the lack of education and resources in the DRC, the results can be serious or even fatal to the citizens battling epilepsy.

The social and cultural consequences of these beliefs and ignorance of the disease are extremely damaging for patients. They can be broadly summed up in one word: rejection or stigma. The exclusion from professional circles is very remarkable; this finding could be related to the terms of employment or professions, so they find themselves making a profession below their skills.

This stigma leads to family rejection although patients are hardly ever expelled from the family.

In some cases, the patient is never totally banished, but no longer has a role in society.

As for marriage, young girls with epilepsy are often married to older widowers or they find themselves pregnant by a man who must avoid responsibility.

The schooling of a child with epilepsy is quite difficult due to certain negative attitudes of teachers, schoolchildren, towards a child suffering from epilepsy.

As a result, patients suffering from this stigma are ashamed of their illness; they often feel diminished and then hide the diagnosis from others. Because the eyes of others are often uncompassionate, inappropriate reactions to seizures through ignorance, often restricting the living conditions of patients suffering from epilepsy than the disease itself.

We lead our various campaigns against this great scourge in schools, churches, television …, and much more we have targeted schools, because the students constitute the basis of communication in the sense that, the latter allow us to transmit to them. Parents turn the message, therefore a real bridge between us and parents.

Much remains to be done in this sector, it should also be noted that this work is being carried out without a single local or international support. And we do not know how to conduct our business at all.

How is it treated?

As for the knowledge of the mode of treatment, we used the question for the general public, around 75% would be convinced that epilepsy is the result of a bad spell, witchcraft, curse … and that the only way to be able to cure would be to resorting to traditional healers, which means that the sick cannot see the doctors until later or after a spectacular failure in the fetishists.

Unfortunately, many are the ones who remain faithful to their healers, because they say: “better to stay here because the chance to be cured is possible rather than to go to see a modern doctor, who apart from the unsatisfactory result, it is necessary to engaging too many resources to pay for the drugs and pay for his consultation sheet”.

So that, for children when they see a person suffering from epilepsy the only way to rule him out would be to throw projectiles, insults … and that regardless of the patient’s age and without it being reprimanded by adults, because all, in the same conception that the disease is transmitted by contact. And the results of our general public survey carried out at Imara College and Hodari High School in Lubumbashi in 2017 confirms this sad reality because 67% of respondents believe that it is too easy for a person suffering from epilepsy to transmit his disease by contact.

Negative Effects from Stigma

The negative attitudes developed in our Congolese society towards epilepsy are quite similar to what MILETTO was able to find among the Dogons in Mali, attitudes of repugnance and fear, and notes that the onset of the crisis Withdraw while leaving the patient alone. However, in case of immediate danger (fall in water, fire) the relatives know how to overcome their reluctance to keep the patient away (Kazadi, 2016).

Concerning the various erroneous causes of epilepsy, we compared this conception with that of ADOTEVI, and STEPHANIE in a survey conducted among the Wolofs of Senegal; having resulted in results such as, epilepsy is referred to an attack by a jinn a spirit that often manifests itself in the form of a whirlwind of wind(Kazadi, 2016).

If we say that the management of this pathology is real, we have proved this argument to this explained by PILARD, saying, the strength is to note that the medical explanation authorizes a disengagement of these (erroneous) cultural representations, which continue little, Or to accompany epilepsy(Kazadi, 2016).

As for school education and profession, if in Democratic Republic of Congo the education of epilepsy is a serious problem in France remember that out of 500,000 French families involved, 90,000 children, many of whom are injured in their unjustified access to education, 300,000 adults stigmatized and penalized in the market including a third unemployed (Kazadi, 2016).

In the Democratic Republic of Congo in general and particularly in the Province of Katanga, the stigmatization associated to epilepsy requires the involvement of the political authorities as well as of the entire population (Kazadi, 2016).

Epilepsies are diseases Neurological disorders that affect about one in 150 to 200 people. This is the second most common neurological condition after migraine. And this condition can appear at any age and at any time (Kazadi, 2016).

Conclusion

The lack of education on a global level regarding epilepsy results in a stigma being labeled on the individuals battling this neurological disorder. Depending on the country, certain protections may be in place while in other countries, they fail to exist.

Lack of education in society results in unnecessary discrimination including being denied further education or gainful employment. The result does not only have a negative effect on the individual battling epilepsy, but on society in general.

Governments must work to put in place laws and regulations to guarantee protections for individuals battling epilepsy. Individuals with epilepsy deserve the right to proper healthcare, educational opportunities, and gainful employment. They should not have to be isolated due to their condition.

Medical professionals along with advocates need to work together to help address these issues to establish a need to make a change that will benefit individuals with epilepsy and society in general.

Resources:

1. Cornell Law School (2020). 34 CFR § 300.101 – Free appropriate public education (FAPE). Cornell Law School Legal Information Institute. Retrieved from: https://www.law.cornell.edu/cfr/text/34/300.101

2. Epilepsy Foundation of America (2013). Finding Employment. Epilepsy Foundation of America. Retrieved from: https://www.epilepsy.com/living-epilepsy/independent-living/employment/finding-employment

3. Kazadi, P. (2016). Epilepsy stigma and its consequences in African population, case of Democratic Republic of Congo, province of Kantaga, city of Lubumbashi. North Africa and Middle East Epilepsy Journal Volume 4 • Number 1 • January • February • 2016

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