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Epilepsy in Uganda: an important lesson on the cultural context of disease

A few months back in our Refugee Health clinic, I met a young asylum seeker from Uganda. She had arrived in the U.S. last November and was referred to our clinic by BMC’s Center for Refugee Health and Human Rights for a semi-urgent medical consultation.

She has epilepsy, which was poorly controlled at the time I first met her. She had been taking her depakote once a day instead of twice daily as a way to extend her limited supply of medication that she had brought with her from Uganda. I assumed that my job was to prescribe her more antiepileptic medication and refer her to our Neurology specialists, but what I did not expect was that an even bigger part of my job as her provider was to learn about and fathom the trauma she had endured back home as a direct result of her epilepsy diagnosis.

In Uganda, epilepsy is heavily stigmatized. People with epilepsy are often isolated from the community due to perpetuated fears that the disorder is contagious. It is not uncommon for people to believe that convulsions are a result of possession by evil spirits. One study on parental perspectives on childhood epilepsy in southwest Uganda showed that a majority of caregivers believed that their children had been bewitched. Another study surveying first-year medical students at a hospital in Kampala, Uganda’s capital city, found that more than 80% of respondents would not allow their children to marry a person with epilepsy. As a young girl, my patient was isolated from her family and her community, treated with a variety of ineffective herbal remedies and was even hospitalized at a mental institution for an extended period of time.

Besides inflicting deep-seated emotional and psychological harm to affected members of society, stigma – as we know well from the HIV/AIDs epidemic – impacts treatment of disease. Ugandan children with epilepsy, thought to be afflicted with an illness of the supernatural, are often taken to traditional healers first. My patient suffered her first seizure at age 8, but it was not until ten years later that her seizures were controlled with antiepileptic medication. She kept seizing, which means that her schooling, her connectedness to her family and her ability to become an engaged member of her community all suffered. Even now as a 26-year-old far away from the community that shamed her, she has difficulty concentrating and sleeping at nighttime because she still vividly remembers her mistreatment.

As a BMC physician, more often than not I take care of patients who have walked a much different path in life than I have walked. This young Ugandan’s story was an important reminder to me that disease can be deeply embedded with cultural meaning. To treat her seizure disorder, I needed more than a pill. I first needed to understand the social context of her illness. Only then would I be able to help her.

This entry was posted in BMC.

One comment on “Epilepsy in Uganda: an important lesson on the cultural context of disease

  1. Great piece, Karen, and a great example of how the complexities of how diseases play out in different cultures and for different patients – and the importance of exploring what a disease means for a given patient in terms of building a therapeutic alliance.

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