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Uganda: Activists Want Tests for Sickle Cell Legalised
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New Vision (Kampala)
14 May 2008
Posted to the web 15 May 2008
Mary Karugaba
Kampala
APPROVE a policy that makes it mandatory for babies to be tested for the sickle cell disease upon birth, activists urged MPs yesterday.
This, they explained before the committee on social services, would enable babies to get special care and treatment.
Prof. Christopher Ndugwa of Mulago Sickle Cell Institute, who led the team, said Bundibugyo had the highest number of sicklers in the world.
According to research done by Mulago Hospital, he noted, there were 6,000 registered sickle cell patients, of which 30% were from Bundibugyo district, 20% Buganda and Busoga and 10% from the north.
The World Health Organisation estimates that annually, more than 250,000 babies are born globally with this inherited blood cell disorder, which causes red blood cells to elongate.
Chronic pain and life-threatening infections may result from the illness.
"We are yet to establish the cause of the spread," Ndugwa said, adding that couples should be screened before marriage to prevent further spread.
"Early diagnosis is the best prevention. When couples test before marriage, it is probable that they will not marry to produce children who are also sicklers," he explained.
"But when the couple is in deep love, they can get counselling and advice on whether to go ahead with the marriage."
The activists included sicklers, their parents, medical workers and the Bannakazadde Women's Group.
According to Ndugwa, late diagnosis and failure by individuals to declare their status on time was the major cause of death and spread of the disease. He said 90% of baby sicklers die before the age of two.
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"When compared, sickle cell is more common than HIV/AIDS. We need to plan for sicklers," he suggested.
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