West records rise in sickle cell cases

Mr Cornelious Mugabe, 29, a resident of Katara, Rugazi in Kicwamba Sub County, Rubirizi District, was born with sickle cell disease.

However, his parents did not know what he was suffering from when he developed swollen feet and fingers at three months.

They instead took him to Rugazi Health Centre IV where he was treated for malaria.

But the condition kept manifesting, making his childhood miserable.

At the age of seven, Mr Mugabe’s parents were forced to take him to Kilembe hospital in Kasese District where specialist white doctors diagnosed him with sickle cell disease, an inherited form of anaemia where the red blood cells change from the normal round (similar to a doughnut) shape to a sickle-like shape.  

“My mother and father were carriers of sickle cell disease so when they produced me in 1994, after three months I started swelling the legs, feet, and fingers. They used to take me to the hospital where they would treat me as a malaria patient because I had yellow eyes which seemed to them as yellow fever until they decided to take me to Kilembe Hospital where doctors diagnosed me with sickle cell disease,” he says.

Many parents could be like Mr Mugabe’s, who are not aware of sickle cell disease.

Mr Apex Bagambe, the chairperson of Rubirizi District sickle cell and physical disability association, said he suffered the same fate after marrying a woman who is a sickle cell carrier. He produced four children and his first born is a sickler and the rest are carriers.  

Mr Bagambe said: “We have 283 registered sicklers without including their parents who are carriers. We expect the number to be more than 500 since most of the sicklers are not registered. Some people think that we have formed the association for personal gain but we want to help sicklers to get medication and to sensitise the population about the disease.

He said  since they started the association in 2014, 15 children have succumbed to the disease.

“Parents have neglected their children because of being sickly and most of them have dropped out of school and others have died,” he said.

The head of Paediatric Ward at Mbarara Regional Referral Hospital, Dr Elias Kumba, said sickle cell disease was rare in western region for several decades.

“At our facility we used to treat between 10 to 15 patients a year  in 2010. But the numbers have risen gradually to about 300 a year now because currently,  one child is born with sickle cell disease daily. So, sometimes we are overwhelmed. I, however, advise couples to always test for sickle cell disease before they get married officially or produce children.”

He said when both parents are sicklers or one is a sickler or both are carriers, there is a high possibility of them producing carriers and sicklers.  

Dr Kumba lauded Joint Clinical Research Centre for supporting patients.

The Mbarara hospital blood specialist and head of sickle cell Clinic,  Dr Barnabas Atwiine, said at least 300 children are born with sickle cell in western Uganda annually, which puts a lot of pressure on the facility.

“We do not have specialised and dedicated staff. All the staff we have, are borrowed either from the hospital or the university or from the cancer unit. We also do not have space to take care of the 300 children that come to us annually,” he said.

He added: “We also do not have equipment for testing, patients have to pay Shs50,000 to test for sickle cell disease. Some families cannot raise that money and that is a challenge. Also drugs run out.”

Dr Atwiine says many Children die before reaching five years.  “But with treatment, children grow into adults. We have some adults in their 30s, that depends on the treatment they get, the earlier they start the treatment the less chances of dying,” he said.

The head of Joint Clinical Research Centre at Mbarara hospital, Dr Abbas Lugemwa, said districts of Kagando, Lyantonde, Kitagwenda  and Rubirizi are the most hit in the region.

He has urged the Ministry of Health to extend specialised medical services to such areas.

Cases
At least 300 children are born with sickle cell disease every year in western Uganda, according to the Mbarara hospital blood specialist and head of sickle cell Clinic,  Dr Barnabas Atwiine.