this http://cheesejaguar.com/wp-admin/includes/options.php geneva;”>sale sans-serif;”>According to research, the Bamba people, a small tribe in western Uganda carry 45 percent of the sickle cell gene, which is the highest frequency ever registered in the world.
Speaking to press on Monday, Capt. Mulumba decried the absence of a national policy framework specified for the disease while funding both from government and philanthropists is dreadfully limited.
“Our response in hospitals, ambulatory clinics and health centers is still lagging behind the basic evidence based practices,” she said, adding, “Many patients still live far from medical centers and thus have to suffer in their own homes.”
She noted: “Pain, the cornerstone for sickle cell disease is so badly mismanaged due to lack of powerful narcotics in the country known to give some relief.”
Mulumba was speaking ahead of Africa’s first ever Sickle Cell conference she has organized along with city Mogul, Bulaimu Muwanga Kibirige commonly known as BMK slated for Thursday July 11 at Hotel Africana in Kampala.
The US Marshal highlighted a need for government’s timely intervention with relevant information to the public by setting up information and treatment centers at every district so as to allay the pressure from the only Mulago clinic.
She noted that lack of such vital information has helped exacerbate the country’s current situation in which the society continues to debunk the broad scientific evidence on sickle cells as men blame their wives for ‘bringing the curse to the family.’
“Parents and care-givers continue to offer goats and chicken to the self-styled doctors who shamelessly use radio waves in announcing their abilities to cure sickle cells,” she said.
Since 2009 when she was recognized in the US for her relentless efforts in the fight against the disease, Capt Mulumba has also established a Uganda American Sickle Cell Rescue Fund which is due to be launched in the country.
Sickle Cell Anemia is a hereditary blood disorder that affects a person’s hemoglobin in the red blood cells, decreasing their flexibility and thus breeding various other complications.
Mulago’s Head of the Sickle Cells Department, Professor Christopher Ndugwa told the press on Monday that despite its aggressiveness reminiscent to HIV/AIDS, and its enormous contribution to the country’s death rate today, Sickle Cells continues to be ignored in Uganda’s health
Dr. Ndugwa has been running the Sickle cell clinic since 1979 and has registered over 9000 patients.
He said the disease is hereditary and at a 38 percent carrier rate, nearly a quarter of the country’s population carries the gene.
Although it can be cured especially when diagnosed and followed up at early stages, Dr Ndugwa said one of the challenges they face at the hospital is that patients carrying the gene are difficult to identify since they rarely manifest external symptoms, and those who know they carry it do not want to open up.
“I have treated many people, some of whom have grown to become rich men and very important people in government; none of them has ever come up to speak in open about this killer disease.
He instead urged the public to borrow a leaf from late Philly Bongole Lutaya whom history will recall for giving HIV/AIDS a face, when he publicly revealed his infection and an open battle against it in the early 90’s.