The Sickle Cell Medical Centre in Mikindani, Mombasa, is a clinic that receives sickle cell patients from the region’s six counties.
Set up by the Sickle Cell Foundation of Kenya, the centre is currently taking care of more than 100 patients with its founder and director, Noah Nalwanda saying 70 per cent of these are children.
He says many of those who bring their children there have gone through some form of misdiagnosis that has caused them unnecessary pain and expenses.
“One child who was passing red urine was told he had bilharzia while another with an enlarged head was misdiagnosed with hydrocephalus,” he says giving an examples of children in his care.
Himself a sickler, Nalwanda says his passion to set up the centre came from a desire to help families afflicted by the disease.
“Just after a few weeks of interacting with other parents who have the disease, new parents discover they are not alone in the struggle and they become more confident in handling their sick child,” he says.
The man, who is in his mid-forties, also serves as a source of encouragement that it is possible to have a fruitful, long life despite the disease’s challenges.
“I was diagnosed with the Sickle Cell while I was six months old and grew up with all the challenges that come with this disease. I however, learnt to manage the disease from an early age,” he says.
According to Nalwanda, those who come to the centre are poor and cannot afford to buy drugs or take a good balanced diet rich in minerals, vitamins, proteins and carbohydrates, which helps guard against flare ups.
He said sicklers, especially children, need close monitoring in order to manage the disease’s various symptoms.
According to the Sickle Cell Disease Association, the disease is an inherited blood disorder that affects red blood cells causing some to assume a sickle (crescent-like) shape. In this abnormal formation, these type of cells have difficulty passing through small blood vessels and sometimes end up blocking these vessels.
With the blockage comes reduced blood flow which results in tissue damage that in term causes complications associated with the disease which include: pain episodes, stroke, damage to the lung tissue, spleen, kidneys and liver which cumulatively leave one easily overwhelmed by bacterial infections. The person will also have issues with anemia, jaundice and gallstones.
Sickle Cell disease is also very prevalent in malaria-prone areas and Nalwanda says through experience, he has learned that malaria is one of the worst ailments a sickler can face.
“Malaria makes the disease more severe and because sufferers do not have normal spleen functions, it takes a really long time for the body to be rid of the parasites,” he says.
The Centre for Disease Control and Prevention makes recommendations that people with the disease can adopt to help them live full, active lives. The first is to prevent infections which can be done by religiously washing hands, which is one of the best ways to keep germs at bay, being careful when preparing food especially when it is raw in order to keep bacteria such as salmonella away. They also recommend children receive all childhood vaccines.
Other precautionary measures include: Adopting healthy habits example, drinking eight to ten glasses of water, eat healthy food, rest as much as possible to avoid exhaustion from physical activities.
