Caring for Uganda’s Ebola survivors

Alex Ssebayigga, 26, is a motorbike taxi rider and farmer from Lulongo village in Uganda’s central Mubende district where the just-ended Sudan ebolavirus outbreak was first detected. Ssebayigga was one of the first people to be admitted at an Ebola Treatment Centre in Mubende Hospital four months ago. He contracted the virus after transporting his sick eight-year-old nephew to a nearby clinic. Ssebayigga is among the 87 Ebola survivors in Uganda. His nephew was not so lucky.

He is grateful for the care he received that helped him to recover. “The health workers who attended to us were very supportive and gave us hope that full recovery was possible,” he says.
After a month at the centre, Ssebayigga was discharged. He then realized that he had just commenced a long journey back to the life he had before Ebola.

Ssebayigga still suffers from physical ailments after he recovered from Ebola. He has a rash on his skin, and the hair on his body turned brown while undergoing treatment and has remained that way. He also has temporary hearing loss when it’s cold or if he waits too long between meals.

Ssebayigga’s symptoms are common among Ebola survivors, who face a host of physical and mental health challenges after recovery. The most predominant complaint is muscular and skeletal pain; and half of the male survivors have experienced scrotal pain. Visual and hearing impairments are also very common

To respond to the unique needs of Ebola survivors in Uganda, the Ministry of Health, with support from WHO and other partners, has established a national Ebola survivor’s programme.

The programme aims to improve access to quality health care for survivors and has established two survivor’s clinics - one in Mubende district and the other in Entebbe, just outside Kampala, and will soon open a third in Kasanda district.

These clinics are staffed with medical professionals such as internal medicine specialists, ophthalmologists, Ear, Nose and Throat specialists, psychologists as well as anthropologists to support survivors for a range of conditions.

All but one of the 87 survivors have had their first consultation at one of these clinics and will be seen every month for the next year and then quarterly for another six months to a year after that.

Dr Ronald Kisembo a laboratory technician at the survivor’s clinic at Mubende Hospital, says the clinic has also benefitted from specialist equipment crucial for treating survivors.

“Thanks to support in the form of medical supplies and human resources from WHO, we can offer medical support to the survivors who come for review with services like complete blood count, urinalysis, semen and liver tests to assess possible effects the virus could have had on the body system,” he says.

Ssebayigga is grateful for the assistance he is receiving at the clinic. “I had red eyes after I was discharged, but this was treated, and I am fine now,” he says. “I believe the rash and hearing problems will also be treated,” he says.

The survivor’s programme does not only address the physical health needs of Ebola survivors, but also the enormous mental health challenges that accompany recovery.

“Our observations indicate that a month after discharge, more than half of the survivors followed up show signs of post-traumatic stress disorder and depression. Some also suffer from memory loss and recurrent nightmares,” says Dr Jerome Ntege, a WHO anthropologist supporting the response in Mubende. The clinic has so far provided more than 100 outpatient consultations.

“To many in our village, surviving Ebola meant coming back to an empty house where most of their loved ones passed away; to a job that is no longer there; to a neighbourhood where old friends are now avoiding them,” says 43-year-old Rebecca Nanyonjo, a local council member in Kiruuma village in Mubende. “Survivors need a lot of support to get out of that depression.”

In addition to offering psychosocial support, the clinics are ensuring that community

Forty-five-year-old Abdul Yiga, a resident of Kalwana village in Kassanda district, is a member of the Ebola Survivors Association, which was formed by survivors under the guidance of staff at Mubende Hospital and WHO.

He experienced the trauma of suffering from Ebola and losing people close to him. He says that at the peak of the Ebola outbreak, he saw people being taken away every day in ambulances. So when the ambulance came for him, he thought he would not return alive.

“But thanks to God, I made it, and I am thankful to the medical workers for their tireless efforts,” he says. “Life in the treatment unit was not easy, but we were always encouraged. I am happy that I made it.”

The survivors association plays an integral role in the lives of its 13 members. They remind each other not to miss appointments at the hospital and sensitize communities to avoid discriminating survivors.

The association supports its members as they get back on their feet, helping them to source financial assistance to regain their livelihood.

WHO has played an integral role in setting up and running of the national survivors programme.

Leveraging its experience in West Africa and the Democratic Republic of the Congo, the Organization has provided technical guidance to the Ministry of Health, including clinical care guidelines and tools. At least seven WHO staff, including case management experts, psychologists and anthropologists have been deployed to the clinics in Mubende and Kasanda districts. It is also supporting the drafting of the national operational plan that will guide the country’s approach to the survivors programme, ensuring that communities are resilient during recovery and that the country remains on high alert for the risk of resurgence.

“The national survivors programme is a continuation of the tireless outbreak control efforts by the Government of Uganda,” says Dr Yonas Tegegn Woldemariam, WHO Representative in Uganda. “I am pleased that WHO has been able to support the government on its journey to end this outbreak and ultimately the health and wellbeing of every Ebola survivor.”