Aminata lost her father and a grandmother, an aunt and several cousins. Other patients at the eye hospital said their immediate families had been wiped out.
Many survivors suffer from “post-Ebola syndrome” — debilitating muscle and joint pain, headaches, fatigue, hearing loss and other lingering ills, sometimes even seizures.
A Virus That Lurks in the Eye
Like the patients he is now trying to help, Dr. Crozier was blinded in one eye by uveitis and recovered — but then lost his sight a second time, to a cataract. He had surgery in March.
His eye disease, described on May 7, 2015, in The New England Journal of Medicine, put the world on alert. Nearly two months after he had seemingly recovered from Ebola, and after his blood was free of it, severe uveitis suddenly developed — and Dr. Yeh was stunned to find that the fluid inside Dr. Crozier’s eye was teeming with active virus. At that time, uveitis was also emerging in West Africa.
Even though the virus may still lurk inside the eye in survivors with uveitis, it is not on the surface or in tears, so patients cannot spread Ebola through casual contact. But operating on them might pose a risk to surgeons who open the eye.
Eventually, the immune system seems to eliminate the virus, but no one knows how long that takes. Eighteen months after the virus was first found inside Dr. Crozier’s eye, a repeat test was negative. But when the virus level actually dropped is not known.
Sierra Leone’s Ministry of Health and Sanitation was eager for Emory’s help, according to Dr. Kwame Oneill, who manages its Comprehensive Program for Ebola Survivors.
“After Ian became ill and had complications, he became a pioneer, a rallying point,” Dr. Oneill said. “Ian’s story was the turning point for survivors.”
The eye hospital in Freetown also welcomed the researchers. Dr. Lowell Gess, who founded the hospital in 1982, had recognized that uveitis was a severe problem in many patients. In 2015, during the epidemic, Dr. Gess, who was 94, began alerting Ebola treatment centers to the condition and recommending medications for it.
How many survivors have eye trouble is not known. Many live in far-flung provinces and have lost touch with health authorities. But a volunteer group, the Sierra Leone Association of Ebola Survivors, has tried to find patients who need help, and has helped pay for travel and lodging so they could consult the doctors from Emory. By this past summer, the Emory team had seen about 50 Ebola survivors with cataracts, from 5-year-olds to people in their 60s.