Despite Ebola’s discovery nearly 40 years ago, little is known about the long- term health effects of the disease for survivors.
The most recent outbreak in West Africa is the largest to date, with more than 14,098 reported cases since March, including 5,160 deaths, according to the World Health Organization. The Centers for Disease Control and Prevention estimate the mortality rate for the current outbreak has been 71 percent overall.
Part of the mystery is because Ebola historically hit rural areas of Africa and then killed high numbers of those infected in a short period of time, giving researchers few survivors to study.
With a greater number of cases in the most recent outbreak, researchers should be able to learn more about the disease and be able to study its effects on survivors, said A. Scott Lea, associate professor of internal medicine and infectious disease at the University of Texas Medical Branch in Galveston. Lea is the clinician for researchers at its level four biosafety laboratory – one of four in the U.S. – where Ebola research has been done for the past 10 years.
There are not a lot of large, systemic studies on the long-term effects of Ebola for health care professionals to learn from, Lea said.
“One that is known in folks with Ebola is uveitis, or inflammation of the inner workings of the eye,” Lea said.
In a 1999 study published in The Journal of Infectious Diseases, researchers found that four of 20 survivors of a 1995 Ebola outbreak in the Democratic Republic of the Congo developed eye pain and vision problems after having the virus, but they improved after topical treatments and steroids.
Margaret Nanyonga, a psychosocial support officer for the World Health Organization in Kenema, Sierra Leone, said on the organization’s website that many Ebola survivors suffer from “post-Ebola syndrome,” which includes body aches and extreme fatigue in addition to the visual problems that affect about 50 percent of the survivors there.
“We need to understand why these symptoms persist, whether they are caused by the disease or treatment, or perhaps the heavy disinfection,” she said.
Chronic arthralgia – or pain in one or more joints, similar to arthritis – was common in people living in villages in Gabon whose blood had Ebola antibodies present, according to a 2011 study in The Journal of Infectious Diseases.
For Nancy Writebol, an Ebola survivor who was the second American flown back to the U.S. from Africa for treatment, it took a while for her stamina to come back. She also struggled with neuropathy, or nerve damage, in her feet.
“My doctors are hoping that I’ll be back to 100 percent and there won’t be any long-term effects. I think we’re getting there,” Writebol said. “With any illness, especially illnesses that are new, you don’t always know what the side effects are going to be and what’s going to happen once you’re released.”
There are also short term post-viral effects, Lea said. Some with Ebola might experience acute renal failure, which usually is reversible, but not always. Others could have brain bleeds leading to stroke or bleeds leading to heart attacks.
“Another well known group of side effects is it persists in semen and breast milk and can still transmit the virus for up to about three months to partners and children, so that’s a concern,” Lea said.