Focus on Disability: The next hurdle for Ebola survivors

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• Many survivors appear to have long-term complications, including disabilities

• This ‘post-Ebola Syndrome’ seems to include sight and hearing loss

• The scale of the epidemic is a chance to improve our limited understanding

Ebola continues to dominate the headlines, with reports of a resurgence last week in Guinea and Sierra Leone. Since the start of the West Africa epidemic, more than 24,000 people have been infected with the virus, and approximately half have survived. As the epidemic eventually subsides, attention will turn to the survivors and what the long-term implications are for them. 

The immediate aftermath is grim. Ebola survivors return home from treatment centres weakened from the disease, often to find that many family members have died. Their possessions may have been burnt in an effort to stop the disease, as recommended by the US Centers for Disease Control and Prevention. And they often face stigma and isolation.

“Very little is known about Ebola’s long-term health impact on survivors. The scale of the current epidemic is a unique opportunity to learn more about this disease.”

Hannah Kuper

It now appears that many survivors are also left with longer-term complications of the disease, including disabilities, that some doctors call post-Ebola Syndrome. Survivors are coming to clinics with uveitis, aninflammatory eye disease that can cause blindness. [1] Hearing loss also appears common, affecting 15 to 30 per cent of survivors. Medics are seeing survivors with pain and fatigue, and men complaining about impotence. Unsurprisingly, some also report psychological problemsranging from depression to memory loss and anxiety attacks. 

Very little is known about Ebola’s long-term health impact on survivors. Most previous outbreaks have been too small to shed light on this question, and so most information comes from anecdotal evidence or small studies. The scale of the current epidemic is a unique opportunity to learn more about this disease. 

Studies where survivors are systematically screened for disabilities and compared with people unaffected by Ebola would help to work out which conditions are associated with the disease, how common they are and how long symptoms last. It would also help to work out whether disabilities are because of Ebola itself, from any treatments or even from the disinfectants used as a precaution. 

At least some of the symptoms, such as those of uveitis eye disease, seem to arise from autoimmune reactions where the body starts to attack itself. Therefore, having a better understanding could point to options for treatment and prevention, for instance through steroids or other drugs to control autoimmune reactions. Going by initial estimates for the prevalence of hearing loss, some conditions may be so common as to warrant screening everyone systematically. 

This brings me to another benefit of such studies: very few disability services are currently available in many of the areas affected by the epidemic. They will have to be built up, whether for prevention of disabling conditions, screening, treatment or rehabilitation. Research into the long-term impact of Ebola will help make the case for such care, secure funds and plan which services are needed the most. 

Hannah Kuper is codirector of the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine, United Kingdom. The centre is on Twitter as @ICED_LSHTM, and Kuper can be contacted on hannah.kuper@lshtm.ac.uk