What is ‘Thalassaemia’?
Thalassaemia is a hereditary blood disorder. Monthly
blood transfusions and daily injection of iron chelation for 10-12
hours are basic treatment for Thalassaemia Major patients to sustain
life. Currently, 1 out of 8 of the population in the HKSAR is a
Thalassaemia carrier. If two persons who are Thalassaemia gene carriers
bear a child, there is the chance of one in four that their offspring
will inherit Thalassaemia Major.
Allogeneic Hematopoietic
Stem Cell Transplantation (HSCT)
Allogeneic hematopoietic stem cell transplantation
(HSCT) is currently the only curative treatment for transfusion-dependent
thalassemia. Human leukocyte antigen (HLA) matched sibling donor
HSCT enjoys a high successful rate both internationally and locally.
However, not all the patients are able to find HLA-matched sibling
donor or HLA-matched unrelated donor. Haploidentical donor HSCT
to treat patients with transfusion-dependent thalassemia to cure
the disease will be an alternative.
Haploidentical HSCT was increasingly practiced in overseas centers
but this is still not considered standard or routine service in
Hong Kong. Therefore, there is no funding support from the Government
or Hospital Authority to provide this technologically advanced treatment
to needy patients. Children's Thalassaemia Foundation will raise
funding for patients to carry out the transplantation with an aim
of complete recovery.
Children’s Thalassaemia
Foundation
Children’s Thalassaemia Foundation was founded in
1993 by a group of medical professionals, patient’s parents and
charitable members of the community, with no subvention from government.
Throughout these years, the Foundation has been inspired to work
towards improving clinical care, supporting medical research and
enhance public awareness of Thalassaemia. This is to ensure that
children born with Thalassaemia major can grow in a healthy and
happy environment.
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