Kenya

Renewed hope: True Sickle Cell foundation to the rescue

A young woman walks in Kibera, Kenya, in front of a mural on fighting the Covid-19 pandemic
A young woman walks in Kibera, Kenya, in front of a mural on fighting the Covid-19 pandemic REUTERS/Baz Ratner

A group of young Kenyan slum dwellers with sickle cell disease have come together to form a self-help foundation for procuring medicine during the Covid-19 pandemic.

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The pandemic has created a shortage of vital medicines necessary for treating the chronic congenital disorder, which causes a depletion of healthy red blood cells to transport oxygen throughout the body.

“The drugs are very expensive. Ten tablets are 7,000 Kenya shillings, over 50 euros, so I had to go without medication. I just had to drink water, get fruits and eat a lot of vegetables," says Valentine Bramz, 21, a sickle cell sufferer.

“At least folic acid is more viable because it is being sold at one shilling each,” she says, adding that the disease can be painful.

To deal with these challenges, one young man decided to bring people together in solidarity, holding frequent meetings to help members and others better their lives and learn how to live with the disease in the absence of medicines.

True Sickle Cell foundation (TSCF) was established in Kibera, Nairobi, in 2019 for patients aged 14-22 years.

“I had a special desire in my heart to reach out to many people to help curb their health challenges like the ones I experience,” says Andugo, who has lived with sickle cell disease for 19 years.

The organisation consists of 24 registered members who have benefited from its initiatives since its inception.

TSCF has been nothing short of a blessing for 17-year-old Bravian Litunda. She describes the meetings as an outlet for members to share personal experiences and techniques that work for them in their daily struggles with sickle cell anaemia.

“This group has really helped us. We educate each other and everyone tries to give their opinions as they understand it,” says Litunda.

“Some say they drink plenty of water, another one could say they always keep warm, another one says they eat food rich in iron to boost blood. So by attending the group sessions you get help from fellow peers,” she adds.

Health volunteers key

Community health volunteers are also a major part of the support, such as Lillian Aoko, an eminent community health volunteer and a Kibera slum resident. She’s been distributing medication from door-to-door to chronically ill patients with limited access to healthcare services.

She also frequently hosts young patients at her home in order to discuss treatment options and dealing with the disease.

“When they come, I guide them depending on their situation and circumstances,” Aoko told Africa Calling podcast.

“They have to stay near someone like a parent who understands them, or a community health volunteer to remind them about their medication. As a community health worker some feel willing to talk to me more than their parents,” she adds.

In many parts of Kenya and the East Africa region, sickle cell disease is a major problem with devastating consequences. However, it is often given low priority by health ministries throughout the continent.

According to Aoko, there is lack of awareness of the condition and not much attention is given to the problem by the health institutions. She says making medication available and taking routine statistics is key in dealing with the disease.

Data from Kenya Medical Research Institute (KEMRI) indicates that secondary school dropout rates are higher among those diagnosed with sickle cell disease, often due to prolonged poor health.

Some believe that sickle cell disease patients do not live beyond age 18, which is not the case, according to Phillip Njoga, a medical practitioner with Amref Health Africa, a medical non-governmental organisation based in Nairobi.

“We have seen patients who live past 30 or 40 years with sickle cell disease so saying that one can’t go past 18 years is not true. The most important thing is just to create awareness – once people are aware about the condition, I think it will end the stigma,” says Njoga.

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