BHF Sickle Cell Disease fundraiser
Have you ever tested for Sickle Cell Disease? Most probably, not many have tested. These are the target for Busoga Health Forum’s Sickle Cell Disease Awareness campaign which was officiated on the 4th of November, 2022 by Jinja Regional Referral Hospital Director, Dr Alfred Yayi, in partnership with AGRICHI Group.
Sickle Cell Disease (nalubiri) is a genetic disorder characterized by sickle-shaped (abnormal) red blood cells which easily break down resulting in blockage of blood flow and a problematic health. Are you perhaps among the fold that associate Sickle Cell Disease (SCD) with witchcraft? Sheltered within our stories of witchery is oblivion, or is it ignorance? Fastened by the strings of a poorly-served Busoga, we have culturally caved in the negligence of finding truth in myths and misconception, Sickle Cell is no exception. More than the SCD testing machine that Busoga Health Forum started to fundraise for at their second-year anniversary celebrations on December 10, 2022, the Basoga need psycho-social support to understand that they can be treated and left free of the Sickle Cell Disease crisis.
It is estimated that about 5,000 children are born with Sickle Cell Disease annually in the Busoga sub-region. While the disease is growing, it is not getting the deserved attention and response from even the national level.
SCD in Busoga is at a very high prevalence yet our community is disadvantaged. Most people don’t know so much about the disease and intermarriages among the Basoga who do not know their SCD status in the same region is at a high, the disease remains within us. Barbra Francis Namulega, 27, from Luuka shared the painful experience about mothering a child with SCD (sickler), at the Busoga Health Forum Anniversary dinner. She confessed that neither her nor her husband had heard of the disease in their lineages, yet were they shocked upon the discovery that their 2-year-old daughter was suffering from SCD.
Minister of Health Hon. Dr. Jane Ruth Aceng this year during a commemoration event for the World Sickle Cell Day (June 19) expressed concern over the high number of babies born with Sickle Cell Disease each year in Uganda, which stands between 15,000 to 20,000, with an estimated 80% dying by 5 years, according to a recent nationwide survey.
The milestone of Busoga Health Forum; the emergence of this regional forum and how it’s intervening in Sickle Cell health care
Sickle Cell Disease is not a thing that comes random to Busoga Health Forum. For a very long time, the forum wished to integrate SCD in their thematic areas but was short of the opportunity to fully exploit it. When it felt ready to celebrate its 2-year milestone, it was quick to remember its long-time concern, the Sickle Cell, and made it the theme of its anniversary celebrations and a core focus henceforth. A couple of years from now, “we’d like our story on Sickle Cell to start at a striking end, which is not Death, rather we’d like the world to hear that we’ve managed SCD,” says a confident Dr Moses Kyangwa, Chief Executive Officer of Busoga Health Forum.
The Secretariat of Busoga Health Forum is on a rescue mission, commanding attention on SCD. It’s started by casting all its energies towards making sure that the 1000 plus members of the forum and beyond understand that it’s their responsibility to end the crisis of Sickle Cell. It is the forum’s wish to redeem the unfortunate reality of an unhealthy Busoga.
There is no hematologist in the entire Busoga Region. We live with the big burden of SCD yet there is scarcity in professionals to deal with it. Most people perform the treatment on a gamble yet it requires specialized care. People get sick and go to Health Centre 2s, 3s, but the disease can’t be diagnosed at lower level where no one knows about it.
At its anniversary, the Guest of Honor, the Second Deputy Prime Minister of Busoga Kingdom, Owek. Osman Ahmed Noor committed his support towards the fight against SCD in Busoga with a generous contribution of nine million shillings during the fundraiser geared towards the care and management of Sickle Cell Disease. The forum has the obligation to mobilize a class of rare specialists to deliver towards this cause as it believes Busoga is capable of world-class solutions. This means enlarging the field of its members’ imagination on how the dramatic voluntary membership service-focused regional mobilization of people can mean much more. The anniversary therefore amplified the power of the forum’s networks and support.
“Whereas some of our members of the forum have done work on Sickle Cell Disease, the findings remain at elite level, but how we can localize it to fit the community is our starting point as Busoga Health Forum,” adds Dr Kyangwa.
How?
- Integrating SCD lessons into our routine activities can make it prominent. People are carriers and they have no idea.
- Popularizing protocols of SCD at lower-level facilities, there’s need to take treatment management and screening protocols on SCD seriously
- Engaging the regional hospital to trigger focus on training caregivers to handle SCD.
Modeling innovative ideas for a #SickleCellfree Busoga
