In July 2013, Uganda Sickle Cell Rescue Foundation (USCRF) was established as a not- for profit Organization with the purpose of having communities aware of sickle cell disease and its social connotations; improving the economic empowerment of people living and affected by sickle cell disease and minimizing stigmatization in Uganda.
The Uganda Sickle Cell Rescue Foundation as an effort of Dr. Bulaimu Muwanga Kibirige of BMK Group and Major Lukiah Mulumba of USA Air force. These were later joined by Mr. Nsubuga Erostus of AGT Group and Dr. Sikander Lalani of Roofings Group. The Technical team is comprised of Prof. Christopher Ndugwa a Sickle Cell expert, Dr. Lawrence Kaggwa a Senior Consultant surgeon and Sister Annet Namirembe the Matron of Nsambya Hospital. These constitute part of the Board of Directors.
It wasn’t too many years ago where Sickle Cell was regarded as a death sentence. Families would often hide their sick for fear of being labeled cursed and isolated from social functions. When known that a family had a person living with Sickle Cell, intimate relationships with any member of that family were often shunned. These families would also at times fear to take these children to schools or hospitals, these children would grow to face the overwhelming health effects which include physical disability (in many of the communities Sickle Cell is synonymous with lameness), blindness, stroke etc. But all that is changing, and the Uganda Sickle Cell Rescue Foundation is playing a big part in the transformation.
Now, instead of seeing people living with sickle cell disease not living positive meaningful lives, you might see families openly talking about sickle cell disease and encouraging their sick to participate in community activities. Until July 2013, the scene described above would not have been imaginable in Uganda communities,
But, with the support from Hotel Africana, AGT Group , Roofings Group and other well wishers ; the Uganda Sickle Cell Rescue Foundation has championed the fight against sickle cell disease making sure that it is no longer a neglected condition . Uganda Sickle Cell Rescue Foundation now wishes to strengthen its awareness and testing program to benefit the youth.
13.5% of the Uganda Population has Sickle Cell Trait
- In Uganda out of every seven people, at least one has the sickle cell trait and out of every 150 people, at least one has the disease.
- Sickle Cell disease varies per region; with the Mid North a sickle cell prevalence ranging from 17-21%, East-Central 16.7%, Mid-Eastern Uganda 16.5% and South-Western region 4.1%.
- 6 to 12 people out of every 100 people living with Sickle Cell disease are affected with Stroke.
- People living with sickle cell disease especially infants and children experience harmful infections such as pneumonia, meningitis, Eye disease, Avascular necrosis (breakdown) of the hip which leads to lameness among the people living with sickle cell.
- Every 1 in 50 disabled people in Uganda has been disabled by Sickle Cell disease.
Dilemma of a sickle cell
Uganda the dilemma of a sickle cell sufferer and the immediate family goes beyond grappling with the overwhelming health effects of the disease. The deeply-rooted stigma from society alone causes families to sometimes hide their sick for fear of being labeled cursed and eschewed from social functions. When known that a family has a sufferer, intimate relationships with any member of that family are shunned