Last Sunday one member from a NGO called Think
foundation came to our parish to tell us about Thalassemia . Since
we decided to organize a blood donation drive the priest in-charge of the youth
suggested that we do it for this cause. It was really enlightening to hear this
man speak as I didn't know much about the disorder and what the people
suffering from it go through.. For those of you who don't know what Thalassemia
is here is some info on the topic ..
Thalassemia
is a genetic blood disease. People born with this disease cannot make normal
hemoglobin (anemia) which is needed to produce healthy red blood cells.
People with a thalassemia mutation
only in one gene are carriers or are said to have thalassemia minor.
Thalassemia minor results in no anemia or very slight anemia. Carriers do not
require blood transfusion or iron therapy, unless proven to be iron deficient.
Children born with thalassemia major usually develop the symptoms of severe anemia within the first year of life. The lack the ability to produce hemoglobin.Prolonged anemia will cause bone deformities and eventually will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions (often every 2 to 4 weeks). These transfusions helps them maintain normal hemoglobin and red blood cell levels.
Children born with thalassemia major usually develop the symptoms of severe anemia within the first year of life. The lack the ability to produce hemoglobin.Prolonged anemia will cause bone deformities and eventually will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions (often every 2 to 4 weeks). These transfusions helps them maintain normal hemoglobin and red blood cell levels.
Because the hemoglobin in red blood cells is an iron-rich protein, regular
blood transfusions can lead to a buildup of iron in the blood. This condition
is called iron overload. It damages the liver, heart, and other parts of
the body.
To
prevent this damage, iron chelation therapy is needed to remove excess iron
from the body. Two medicines are used for iron chelation therapy.
- Deferoxamine is a liquid medicine that's given slowly under the skin, usually with a small portable pump used overnight. This therapy takes time and can be mildly painful. Side effects include problems with vision and hearing.
- Deferasirox is a pill taken once daily. Side effects include headache, nausea (feeling sick to the stomach), vomiting, diarrhea, joint pain, and fatigue (tiredness).(Info edited from this site)
Undergoing transfusions every two weeks from the time you are kids is no small
feat, it is a way of life for these patients, the person from the NGO told us
that they even joke about it. Also because of the high number of transfusions
they undergo they have a greater risk of contracting various blood-borne
diseases such as HIV, AIDS, hepatitis B, hepatitis C. Apart from this they are
at a greater risk for heart disease as well as osteoporosis.
Mr V told us that since every disease has a window period when the virus cannot
be detected, sometimes the patients can receive infected blood and not know
about it. The best and safest donors are those who donate blood voluntarily and
this is one of the reasons that the NGO conducts blood donation drives almost every
day, so that blood banks are stocked with enough blood from "safe
donors" and there is enough for those suffering from thalassemia or any
other disorder.
I have been donating blood once a year from the time I turned 18 and never
thought twice about it. I didn't think about where the blood went, who it must
go to and about what a difference I would be making by this one act that I did
without even thinking too much about. Last Sunday I realized what it can mean,
not only for people suffering from thalassemia but from any other
disease or disorder, that there is enough of blood stocked in the blood banks.
It makes this drive we are conducting even more meaningful and has filled
me with the enthusiasm to see a lot of people coming to donate blood on 25th
March!
I am keeping my fingers crossed and telling
everyone I know about the drive. Whether it is to donate blood, spread the
word, or simply come to support the people donating blood, everyone can help.
Please do pray that we have a successful drive!
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