By Ssebandeke Ashiraf
On Wednesday last week I was in Gulu for a burial of my long time friend. She had died of complications after surgery but were not in any way related to surgery. Patricia was 25 year promising young lady who had just graduated from Makerere University in January this year. Patricia was suffering from sickle cell disease which has claimed many lives of Ugandans and few are ready to talk about it. Her father used the burial function to teach and educate the mourners about sickle cell.
On 11th July the Speaker of Parliament Hon. Rebecca Kadaga at the First Annual sickle cell conference promised the attendees that she was going to bring the issue of sickle cell at the fore front in Parliament.
Sickle cell is the most non-communicable disease that has been neglected. It's estimated that 20% of Ugandans carry the sickle cell gene and are at a risk of producing a child with sickle cell. It’s estimated that 33,000 babies are born with the disease every year according to statistics which were last compiled in 1970s.
20% means that for every 5 people you meet one has the gene without discounting the sicklers themselves. In simple terms 1 out of 5 ministers, 1 out of 5 Members of Parliament, 1 out of 5 Cranes players carry the sickle cell gene.
It’s predicted that the plight of sickle cell will triple globally by 2040 when Uganda shall be fulfilling its “Vision 2040”.
The burden of sickle cell can affect all aspects of lives of individuals to include physiological, psychological and social well being.
Sickle cell related stigma is increasingly becoming a major public health issue that is receiving less attention. Young adult immediately after transitioning from pediatric to adult care are at risk due to many challenges of managing the chronic illness while accessing and navigating the healthcare system which is limited or non - existent for this population.
Creating more awareness and education about this disease remains a challenge to changing attitudes and dispelling myths about both the disease and about those who suffer from it. While those suffering from sickle cell are living longer, they continue to endure stigma and other psychosocial issues including stress that continue to be associated with the disease.
Much of the stigma is based on myths and misinformation. Imagine going to a hospital and doctors/nurses pre judge your condition. I remember a friend of mine who had gone to Acute in Mulago hospital and found a mother with her baby who was told to go home on Friday when the baby’s blood level was 4.5 and when she came back on Monday the blood level had dropped to 2.
Imagine being told “You should be used to this pain by now” whom do you think can be used to pain.
One way Uganda can make progress in addressing the issue of stigma and other issues related to sickle cell disease is to identify the areas where we can move forward.
We need to highlight the need to increase awareness and understanding of this disease, promote education, research and provide funding for the drugs, training and expand the development of transition services for adolescent to adult care health care.
We must continue to educate ourselves, healthcare providers, school health nurses, and the business community about the specific and broad aspects of this crippling and chronic disease and advocate for new discoveries, advancements and breakthroughs for sickle cell, the most common and oldest inherited blood disorders.
We should encourage those living with the disease to speak up or own up, awareness in tertiary, secondary institutions to break the stigma of being a sickler. Music, art, sports and entertainment can be tools to convey message to the people.
There is steadily increasing number of children being born with the disease. Most couples do not know that they carry the gene. Marriage and genetic counseling for intending couples would help them make informed decisions.
I strongly advise people carrying the gene to make informed decision. It is not just about you, you must also know the life of your children is at stake. If you know you cannot cope with the rigors and financial challenges of having a sickle cell child, the do not give birth.
The writer is the Country representative, African Sickle cell News and World Report