Mutatiina stressed that because of the limited awareness about the disease, they have only tested 4,508 people since 2023, and out of these, 653 were found to be sickle cell carriers.
Limited awareness about the need to know one’s sickle cell
genotype is affecting mass screening for the disease. Sickle cell disease is
a congenital blood disorder that presents with the production of abnormal
hemoglobin known as hemoglobin S.
The disorder makes red blood cells become stiff
and sickled or curved, causing painful crises, increased infections, and sometimes organ
damage in patients. Uganda has the fifth
highest burden of Sickle cell in Africa, with between 5,000 to 20,000 born with
the disease each year, of which 80 percent die before they reach 5 years,
according to the National Institutes of Health.
This figure indicates
that the disease is a big public health burden, and has led many individuals to come up with initiatives to tackle it. One such organization,
Tackle Sickle Cell Africa, was founded in 2022 by Derrick Mutatiina to create
awareness around sickle cell in northern Uganda, which has the highest
prevalence of the disease.
With logistical support
from the Ministry of Health, Mutatiina revealed that Tackle Sickle Cell Africa
started doing free community screening for sickle cell in 2023.
However, due to the lack of awareness about how the disease is acquired, many
people say they don’t see the need to do a sickling test. Mutatiina stressed that
because of the limited awareness about the disease, they have only tested 4,508 people since 2023, and out of these, 653 were found to be
sickle cell carriers.
//Cue in: “Otherwise
the turn-up…
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children.”//
The tests were carried out in Gulu City, Gulu district, Omoro, Pader, Arua, and Amuru, while others were tested during an outreach in Jinja, and six outreaches in Kampala. Research by Grace
Ndeezi, a professor of paediatrics and child health at Makerere University
School of Public Health, indicates that the northern region has the highest
prevalence of sickle cell at 18 percent.
The eastern region follows closely
with 17 percent, the Central region has 10 percent, and the Western
region has only 4.1 percent. Mutatiina said there is
a need for more organizations to take their work to regions with high
prevalence of sickle cell, to create awareness about the disease, and to
advocate for people of reproductive age to do the test before marriage.
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compare…
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much.”//
Mutatiina explains that when couples intending to marry know that
they have the sickle cell trait, it saves them the emotional and financial strains
of having a child or children with sickle cell. A trait is a person who inherits one sickle cell gene and one
normal gene (also known as a carrier). Sickle cell carriers do not get signs or
symptoms of sickle cell disease, but they can pass the trait to their children.
When both parents have the sickle cell trait, there is a 25
percent chance of them having a child with sickle cell in every pregnancy. There
is also a 50 percent chance that the child will inherit one abnormal sickle cell
gene and one normal gene and become a carrier like their parents. The other 25
percent chance is that the child will inherit only normal genes from both
parents, and will not have the trait or the disease, according to the
Centers for Disease Control.
