Over decades, sickle cell health care in Uganda has been swept under the rug. Statics at Mulago sickle cell clinic indicate that there is over 25,000 babies born with sickle cell disease every year and majority of them die before the age of five.
Mulago clinic alone receives at least 50 new patients every month, pointing to a rising trend with over 10,600 registered patients.
It is widely suspected that the number of those undiagnosed is growing as well but without systemic change in order to shift the narrative.
Few people of good will and organisations have come out to concern about life of sicklers especially those in the most destitute living. Little they need apart from love and care according to Sarafina Bukirwa, the Executive Director of Sarafina Sickle Cell Society-SASCELL located at Seeta Mukono.
Bukirwa says that from the different outreaches they have realised that sicklers discriminated and stigmatized by the people in the community where they live, families, schools and general society.
She attributes this mainly to the misconceptions and the lack of knowledge about the sickles sickle cell gene in our society.
Against that background, SASCELL decided to have an open day for all sicklers, caretakers, and the general community to share the love, hope, care and awareness thus bridging the knowledge gap hypothesis.
On the same day, a sickle cell clinic is organized where out patients are medically checked and examined on top of being given drugs.
A kids corner is also arranged to basically share love with the kids and encouraging them to became familiar with their health status using practical approaches (inclusiveness) thus helping them to accept who they are.
As sickles grow up, they become prone to society influences and peer pressures to the extent of forgetting to take their medication. Also the youth corner is arranged to empower the youth (both sicklers and non sicklers) with self-awareness, esteem and decision making skills thus becoming responsible people.
Most of the sicklers come from families without much knowledge about sickle cells, a caretaker’s corner garbs them also to share parenting experiences as far as sickle cell is concerned and also reduce cultural misconceptions that are attached to sickle cell patients.
According to Bukirwa such network brings them together to share experiences with different people, making new friends, sharing contacts and building strong bonds which at the creates informed sickle cell advocates.
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