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Make a Difference
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By Amal Zakaria
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December
12, 2004
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A
couple of days ago I had a conversation with a thalasemic major
patient. You are probably wondering what that is?!! Well it’s
a type of chronic anemia that is hereditary and affects mainly
the people from the Mediterranean region. This disorder leads to
hemolysis
[i.e. breakdown] of red blood cells which is an important
component of blood that carries oxygen to and carbon dioxide
away from different body tissues. The patient as a result
suffers from anemia with the symptoms of fatigue, inability to
concentrate, shortness of breath, increased heart rate and in
severe cases, heart failure. This type of anemia can only be
corrected by regular blood transfusions [an average of 2
transfusions / month]. In short, these patients are dependent on
blood transfusion in order to live.
Yehia
is 28 years old but looks only 18. Stunted growth and affection
of I.Q are 2 of the main complications of the disease. As I
listened to his long life struggle with the disease I felt
really sad. Since the age of 6 months he had to be transfused
regularly with blood. With an illiterate mother and 6 other
brothers Yehya never had enough parental care. Lack of education
coupled with poverty had both affected his health negatively. He
only managed to finish fifth grade and now he cannot recall how
to read or write. After dropping out of school, he had to train
as a carpenter. Now he is too sick to work and consequently quit
his job.
Thalsemia
Major in a developed country may not seem to be such a terminal
disease but here in
Egypt
, with lack of proper health insurance and availability of
blood, thalasemic major patients die at a young age [late
twenties]. When I asked Yehia about the main problems he faces
as a thalasemic patient he replied that many times when his
transfusion is due he could not find his blood type. B-positive
blood group is not rare and I could not hide my surprise
wondering how patients with rare blood types deal with that
problem.
At
other times the doctors are too busy to pay him any attention.
Sometime ago he refused to take blood for a period of 5-6 month
due to his immense fear of getting infected by HIV. Somehow his
knowledge of the disease startled me. I came to realize that
most transfusion dependent patients are aware of the blood borne
diseases…unfortunately many of these patients have acquired
Hepatitis B virus or hepatitis C virus. Yehia himself is
Hepatitis C positive.
Another
problem he encountered is the lack of tactfulness in people!!!
Thalasemic patients have particular facial features, as a result
of their long standing disease. They have very prominent
cheekbones and foreheads with protruding front teeth and a muddy
discoloration of the skin. All these features are a sequel of
hyperactive bone marrow which is the main factory for RED blood
cells formation. It becomes overactive in an attempt to
compensate for the breakdown of red blood cells. Yehia
complained of people who stop and stare at him and some even
come and ask him why he looks different?!!!
Dear
brothers and sisters Yehia is only one example of many
transfusion dependent patients that exist in our society and
some of us don’t even know about them.
I
thought that by sharing his story with you, you may find ways of
helping him and others. The simplest thing that can be done is
to donate your blood regularly. If you think you are fit and
healthy, don't hesitate to help the less fortunate ones. May
Allah accept our small contributions. Ameen.
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