Thalassemia Major -A grim picture warranting every step
from those who care:- Thalassemia Major is the most common deadly
genetic disorder worldwide and consists of a very severe, transfusion
dependent, anemia generally presented during the first year of life. It occurs
when both parents are Thalassemia carrier. It's particularly associated with
people of Mediterranean, Indian subcontinent and Middle East origin. The World
Health Organization (WHO) has identified control of haemoglobinopathies,
particularly ẞ-thalassemia, in developing world, as a priority.
There are approximately 80000
children suffering from this ailment in Pakistan and further estimated 5000-
9000 children with ẞ-thalassemia are born per year, although no documentary
registry is available in Pakistan. The estimated carrier rate is 5-7%, (9.8
million carriers in the total population) with the ethnic distribution of
Punjabi- 4.6%, Pathan 5.2%, Sindhi- 4.3%, Baluch-8.0%, Urdu Speaking-5.3%.
With gradual control of
malnutrition and communicable diseases, B- thalassemia major patients who
earlier died young are now surviving long enough to seek medical attention. In
developing countries like Pakistan, this poses an increasing burden for
health-care services as adequate blood transfusions with effective iron
chelation and bone marrow transplantation is affordable for just a few,
therefore, prevention has been demonstrated to be the way forward.
Having a child with Thalassemia
major may cost a family an average of 200,000 rupees per year for non curative
supportive care i.e. regular blood transfusion and removal of toxic iron from
the body by injection or tablets which is higher than average income. Even
though optimal supportive care may extend life expectancy to adulthood, this is
not accessible to the majority of Pakistani children and most of them die prior
to adolescence. In addition, because of frequent transfusions, many children
acquire blood borne infection, particularly Hepatitis C.
This extremely depressing and
exhaustive ailment is preventable. Countries like Italy, Cyprus, Sardinia and
Iran have completely eliminated further birth of Thalassemia children from
their countries by creating mass awareness and blood screening etc.
Effectiveness of a 20-year control program in Sardinia is evidenced by
reduction of the birth rate of thalassemia major from 1:250 live births to
1:4000. Mass awareness, Population screening, genetic counseling, prenatal
diagnosis and option of terminating affected pregnancies remain the mainstay
strategy to devise an effective Thalassemia control program.
In Pakistan there is dire need to
take every step possible to prevent further birth of Thalassemia children.
Besides other measures, creating mass awareness in this regard would be of
immense value.
Cure2 Children (C2C) foundation
is an international nonprofit organization authorized to work in Pakistan. It is
made by effected Italian and Pakistani parents and the treating Italian
physician of their children. Through their program of "Prevention and cure
of Thalassemia major in Pakistan", a 'Bone Marrow Transplant unit in
Children hospital, Pakistan Institute of Medical sciences (PIMS) has been
established with the collaboration of PIMS. Here, Bone Marrow transplants of 39
Thalassemia children have been performed with the joint efforts of C2C, PIMS
and Pakistan Bait-ul-Mal
In continuation of efforts for
prevention of Thalassemia major in Pakistan, the C2CF has requested Pakistan
Post Department for issuance of a series of Postal stamps. C2C has got these
designed and painted by 'Andrea Mancini', a famous artist from Florence, Italy.
Issuance of a series of Postage Stamp aimed at creating mass awareness in this
regard will go a long way in this humane mission.
On Prevention of Thalassemia major, Pakistan Post is issuing a commemorative postage stamp of Rs.8/- denomination on May 8, 2012.
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