By Sylvia
Amina Kakwezi a sickler who has lived to celebrate her 26th birthday. She narrates that her parents were able to detect the disease as early as six [6]months which helped her get enough attention and the care she deserved. She surmises some parents do not mind to know about the disease, which has made the disease increase.
Reportedly, there is a gradual increase in cases of sickle cell disease in the Rwenzori region, Dr. Francis the sickle cell focal person Fort Portal regional referral hospital, has encouraged people to start considering sickle cell test before getting into relationships.
According to Dr. Francis, there is currently hardly any clear statistics of Sickle Cell disease, but in every 10 people tested 3-4 are sticklers and 4-5 are Sickle cell carriers which calls for immediate intervention.
What is Sickle cells?
Dr. Francis Musinguzi has described Sickle cell as a disease that affects red blood cells to lose its shape from oval to sickle like thus blocking vessels to supply Oxygen and blood to other parts of the body.
He adds that to be a sickler, a child inherits a copy of the sickle cell gene from both of their parents who are carriers of the cell gene known as traits.
Notably, sickle cell disease can be diagnosed at an age of 3 to 4 months with signs like joint pains, chest pains, difficulty in breathing, and yellow ears.
Dr. Musinguzi further explained that despite the fact that sickle cell disease is not curable, it can be managed with hydroxyurea medicine that is only prescribed by a certified medical doctor accompanied with drinking a lot of fluids.
M.O.H Perspective on the disease
According to Ministry of Health Uganda, Currently, 33,000 babies are born annually with the disease of which, 80% die before the age of 5 years http://www.sicklecelluganda.org.
A health worker revealed that up to 100 children are received at the pediatrics department in Mulago and many die without the doctors and parents knowing the cause of death being Sickle cells.
The above statistics, seemingly call for fast intervention through promoting sickle cells screening at birth and at all stages. This is however only possible with procuring of more Hemoglobin electrophoresis machine to support the only one at Mulago hospital.
What other victims say
Joseph Mwebesa and Doreen Kobusinge both parents to children with sickle cells, say that its painful and heartbreaking to give birth to a sickler.
They further reveal the disease is complicated which might make some one take long to believe it especially when they have no knowledge of sickle cells in the family background.
Kobusinge, adds that it’s never optional to take care of sickle cell patients, since they spend most of their time sickly and need attention.
She says a patient to survive, must follow prompts as directed by health workers, on top of taking daily folic acid supplements, a lot of fruits, vegetables, fluids and maintaining stress.
Amina Kakwezi 26, advises fellow sicklers to always fight for their lives through giving a deaf ear to false perception on how they can’t live longer. She further notes they must keep selves warm and happy.
Notably, Sickle cell disease is the most common genetic disease that is particularly prevalent in Uganda with 20 percent traits of its total population affected.
Sickle cell disease is very painful and shortens life expectancy of a person compared to other significant chronic conditions.
