Despite Leading in Huntington’s Disease Prevalence, Egypt Gets Left Out of Trials

According to a story from Huntington’s Disease News, Egypt is able to claim the dubious honor of being the Huntington’s disease capital of the world when it comes to its percentage of population that is affected. With a population of around 100 million people, the nation also has roughly 21,000 patients, which equates to 21 of every 100,000 people having the disease. Despite the prevalence of Huntington’s disease there, a grand total of zero of nearly 130 studies conducted in the last ten years related to the illness has included patients from Egypt.

About Huntington’s Disease

Huntington’s disease is a heritable disorder that causes brain cells to die. This is a long term, progressive, and ultimately lethal disease that causes severe debilitation over time. The disease is caused by a genetic mutation that affects the HTT gene. It normally appears between 30 and 50 years, but in rare cases it can occur before age 20. Symptoms of Huntington’s may first appear as subtle mood and behavioral changes and loss of coordination. Other symptoms include random movements called chorea, abnormal posture, sleep issues, trouble chewing, swallowing, and speaking, dementia, anxiety, depression, and impulsivity. Nine percent of deaths are the result of suicide. Treatment for Huntington’s disease is symptomatic, with no cure or disease altering therapies available. Most patients die around 15 to 20 years after their diagnosis. To learn more about Huntington’s disease, click here.

Separation Hampers Research

About four studies related to the illness are conducted each year, but the participating countries are often from Western Europe or the US despite the fact that the rate of the disease is only about half that of Egypt in the EU. Part of the explanation is probably circumstantial as these countries have greater familiarity working together, but the exclusion of Egypt when it has such a significant Huntington’s disease population is unacceptable.

The West appears to be hoarding scientific and medical capital from the rest of the world by ignoring other countries that could benefit from participating in trials; this also makes to data gathered from these studies less scientifically useful. Greater cooperation in medical research between the Western world and Middle Eastern countries would be of benefit to all participants and patients in Arab countries are simply being left behind by being excluded, whether intentional or not. 

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