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Looking At Hemophilia from the Kenyan Lens

Hemophilia is still a little known condition in Kenya, despite being the most co
mmon among bleeding disorders. It is characterized by little or absence of clott
ing factor in the blood. Due to this, hemophiliacs bleed longer than usual. It
is genetically transmitted through the mother, but about one third of hemophilia
cases are random (i.e. appear where no previous history has been recorded in th
e family tree). There are two types of hemophilia, type A and B. People with hem
ophilia A lack clotting factor VIII (eight) while those with Hemophilia B lack c
lotting factor IX (nine). In both, the effects are the same, although type A is
more common.
Research indicates that the severity of the bleeds depends on the degree of defi
ciency of factor. Factor levels keep changing and a bleed tends to occur for a l
onger time when the factor is low. Similarly, the magnitude of hemophilia varies
and can be classified as moderate, mild or severe. Some people have gene mutate
d factor, meaning it’s there but does not function properly, while others have non
e at all. It’s also easier to notice in white children because of the bruising, th
an in darker coloured children.
Children with hemophilia run the risk of developing other complications such as
dental and physiological problems. It is therefore important to teach them prope
r oral hygiene such as brushing teeth well, to avoid bleeding gums and cavities
which could lead to tooth extraction. Physiological problems are caused by spont
aneous internal bleeding. The bleeds occur in the joints, cause severe pain and
are experienced more at night. Bleeding knees and elbows affect the mobility of
hemophiliacs and are a leading cause of disability.
Consequently, the young hemophiliac may not be among those who undergo circumcis
ion, because of the risks associated with excessive bleeding. This may lead to e
motional disturbance, especially for the young man whose community has always en
gaged in circumcision and upholds it as a rite of passage. As such, a lot of cou
nselling is required to help them accept this eventuality.
An estimated one in 10,000 males in the world is hemophiliac. The condition affe
cts all races and ethnic groups equally, meaning that Caucasians, Africans, Hisp
anics etc stand an equal chance of being hemophiliacs. In Kenya, there are over
1,000 diagnosed cases while approximately 3,000 remain undiagnosed or without ca
re.
So far, Murang’a has been identified as a high prevalence area, leading to the est
ablishment of a Treatment and Outreach Centre in April last year. During this ye
ar (2011), the Society will celebrate the World Hempohilia Day creating awarenes
s in Mombasa. It is expected that other Centres will be put up, as the JMHSK-K c
ontinue with outreach efforts throughout the country.
FACT BOX

• the World Hemophilia Day is celebrated worldwide on 17th April annually


• Hemophilia predominantly affects male children, while female children become car
riers
• about 2,500 people in Kenya are estimated to be living with hemophilia although
only a small fraction of these have been diagnosed
• treatment costs over Ksh. 140,000 per vial
• there are currently 2 outreach centres in Kenya, at the MP Shah hospital and Mur
ang’a District hospital
• tooth extraction and other forms of surgery can only be conducted under general
anaesthesia, for bleeding to be controlled
For more information:
Jose Memorial Hemophilia Society-Kenya
Email: info@jmhsk.org Website: www.jmhsk.org
World Federation of Hemophilia
www.wfh.org.