SICKLE CELL STIGMA: TEACH, EDUCATE, OWN UP AND SPEAK UP.
Patricia Akoth Barbara Okello
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 health care 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 psycho-social 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, health care 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 counselling 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 rigours and financial challenges of having a sickle cell
child, the do not give birth.
Email: askamulale@gmail.com
