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Taiwan Thalassemia Association
Thalassemia is a kind recessive genetic disease. Patients with
severe thalassemia cannot sufficiently produce red blood cells, thus resulting
in serious anemia. Therefore, thalassemic patients must receive blood transfusions
intermittently. As a side effect of the transfusions, however, iron
accumulation may occur, and eventually the internal organs will experience
detrimental effects such as: heart failure, irregular heart rate, liver
dysfunctions, diabetes, endocrine system disorders and retard puberty.
Regarding thalassemia, the major symptoms are severe anemia and gradual iron
accumulation. Patients usually receive medical treatment before two years of
age; they must receive blood transfusions on a regular basis (once every two to
four weeks) and receive Desferal injections (for 8 to 12 hours every night) to
remove the excess amount of iron from their body.
Thalassemia
is devastating to the lives of patients: frequent blood transfusions and
iron-removing injections can be very painful; furthermore, many patients
without proper treatment experience facial frame deformation, enlargement of
the spleen, diabetes, and many other detrimental effects to their health. In order to survive, these patients need
unconditional love and attentive care from their family members, as well as the
support and concern of the society.
Historical
Background
Understanding
the pain and difficulties of Thalassemia, a group of patients, family members,
nurses and doctors have gotten to gether to form an organization. With public
donations as its main source of financial aid, the Taiwan Thalassemia
Association was formed in June 1994. It began to fight for the rights of the
patients, promote public awareness, and establish a system of communication
with patients all over Taiwan.
There are 400 members at present,The almost
of members is thalassemia major patients and parents.
Services and Objectives
The
organization aims to alert the public’s awareness of this devastating disease.
In addition, it struggles to improve the condition of the patient’s medical
treatment, and also provide them with the latest information about medical
researches.
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1. patients scholarship |
2. Patient support group |
3. Family support group |
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4. promote public awareness
about disease prevention |
5. Home care service |
6. Public promotion |
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7. Attending international
TIF conference |
8. Establishing medical seminars |
9. Medical consultation |
Prevention with Health Examinations
Even though you may feel healthy, it doesn’t mean that you are not a
carrier of Thalassemic genes. According to medical research, most parents of
Thalassemic patients did not have any prenatal exams before giving birth to
their infants; therefore, it is extremely important that you take a blood test
before marriage or before pregnancy to see if you are a Thalassemic minor.
If test
results confirm that you are a minor, don’t panic! Most Thalassemic minors do
not need any medical treatment or clinical aid. However, you must be very
careful that your (future) spouse is not also a Thalassemic minor. If both
spouses are a minor, there is a 1/4 probability that their child will be a
Thalassemic major, a 1/2 chance that the child is a minor, and a 1/4 chance to
be perfectly normal. If only one spouse is a minor, then there is a 1/2 chance
that their child will be a minor, and 1/2 chance to be normal.
Taiwan
Thalassemia Association
Telephone：886-2-23891250
Fax：886-2-23891362
Website：www.thala.org.tw
E-mail：thala@thala.org.tw
Address：No.1,
Chang-Teh Street
,
Taipei
,
Taiwan
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