By Claire Zerida Balungi
HEALTH: 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 held on the November 4, 2022 and presided over 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? Busoga Health Forum (BHF) has culturally caved in the negligence of finding truth in myths and misconception, Sickle Cell is no exception. More than the SCD testing machine that BHF started to fundraise for at their second-year anniversary celebrations on December 10, 2022, the Basoga need psycho-social support to understand that the Sickle Cell Disease can be treated.
It is estimated that about 5,000 children are born with Sickle Cell Disease annually in Busoga sub-region. While the disease is growing, it is not getting the deserved attention and response from stakeholders.
SCD in Busoga is at a very high prevalence yet our community is disadvantaged. Most people don’t know much about the disease and intermarriages among the Basoga who are oblivious of their SCD status is high. Barbra 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 and were shocked to find out that their two-year-old daughter was suffering from SCD.
Health minister Dr. Jane Ruth Aceng during a commemoration event for the World Sickle Cell Day (June 19) last year expressed concern over the high number of babies born with Sickle Cell each year in Uganda, which stands between 15,000 to 20,000, with an estimated 80% dying before the age of five years, according to a recent nationwide survey.
Sickle Cell Disease is not new to BHF. For a long time, the forum wished to integrate SCD in its thematic areas but was short of the opportunity to fully exploit it. When it felt ready to celebrate its two-year milestone, it was quick to remember its long-time concern, 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, the CEO of Busoga Health Forum.
The BHF Secretariat is on a mission to end SCD. It has started by ensuring that the 1,000 plus members of the forum and beyond understand that it is their responsibility to end 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 of 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 IIs, IIIs yet the disease can’t be diagnosed at the lower level where there is limited knowledge about it.
During the anniversary celebrations, the Second Deputy Prime Minister of Busoga Kingdom who graced the event as the guest of honour, Owek. Osman Ahmed Noor, committed his support towards the fight against SCD in Busoga with a generous contribution of Shs9 million. 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.
Dr Kyangwa said that whereas some of our members of the forum have carried out research on Sickle Cell Disease, the findings remain at elite level and need to be localized to fit the community through;
– Integrating SCD lessons into our routine activities to 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