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- PRESENTED BY:
- DR MOUSSA BARQAWI
- CONSULTANT PEDIATRICIAN / HEMATOLOGIST -ONCOLOGIST
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- B-Thalassemia and other Hemoglobinopathies (mainly sickle cell disea=
se )
are common genetic disease in Jordan.
- more than 1000 patients are registered
- With a carriers rate between 3-6%
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- 1-Is variable
- 2-The majorities are in Amman, north of Jordan and the valley of Jor=
dan
- 3- There are 5 Thalassemic centers In Jordan where patients are
registered
- 4- the remaining patients are followed in the different hospitals ,of
the ministry of health, royal medical services ,universities hospital
and private hospitals.
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- 60% of the patients in central Jordan which include Amman , Zarqa , =
and
sult
- 35% of the patients are in irbid area
- 5% of the patients are in the other areas
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- ALBASHIR hospital Thalassemia Center-AMMA 410
- Amira Rahma hospital thalassemia center)-Irbid:219
- Zarka Hospital Thalassemia Center&n=
bsp;
:90
- Ghor Alsafi Thalassemia Center:30
- Ajloun Thalassemia Center:?
- Others:250
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- Molecular defects in Jordan were studied and identified by Dr. Alkha=
tib
and Qubbaj of Jordan University which show the following:
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- Treatment of thalassemia, as other chronic blood diseases, is comple=
tely
free of charge and covered by the ministry of health.
- This treatment includes:
- Hyper transfusion regimen (RBC’s transfusion given every 3-4
weeks to keep Hb level above 9.5 gr/dl) Washed RBC’s are given
for patients in Albashir center and Irbid center, otherwise packed
RBC’s are given in other places.
- Before every transfusion, patients are screened for antibodies (to
detect alloimmunisation)
- Transfused blood is screened for hepatitis B and C viruses, for HIV
virus, and syphilis.
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- Cardiac complications
- Regular clinical follow up and yearly echocardiography after the ag=
e of
10 years.
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- Hepatic complications
- Regular clinical laboratory follow up of liver function tests.
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- Regular follow up of sugar and yearly OGGT (Pancreas)
- Regular follow up also of the Serum calcium, phosphorous, and
alkaline-phosphatase and yearly PTH assay after the age of 10 years=
- Regular follow up of the thyroid function tests
- Regular follow up of the sexual hormones
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- All ours thalassemia center are in need of psychologists and social
workers, the Ministry of health are=
working to resolve this problem, and we hope that, very soon =
this
problem will be resolved.
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- The international results are quite excellent.
- The Jordanian experience is limited just starting in a good way and =
the
results are encouraging.
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- New births of infants with thalassemia continue to be a major proble=
m in
Jordan even in the families who already have an affected child. This
with the expensive cost of the medical care makes the prevention the
crucial corner store in the treatment of thalassemia so an effective prevention<=
span
style=3D'mso-spacerun:yes'> program is needed.
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- Preventive program in Jordan includes:
- Health education program where are involved the ministry of health , the
Jordanian blood diseases association and NGO
- Screening program : premarital screening tests which is actually fr=
ee
and obligatory.
- The Genetic counseling addressed mainly for carrier couples already
married and for positive tests of both fiancés in the premar=
ital
screening
- Prenatal diagnosis : Technically possible (In the genetic laborator=
y of
Jordan University) but religion and laws didn’t permit aborti=
on.
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- We are in the mid way.
- Many effort still needed in the domain of:
- Early detection of the cardiac complications which constitute the
leader cause of mortality.
- More efficient prevention program with generalization of the prenat=
al
diagnosis and controlled abortion
- Generalization and expanding of the BMT experience to the other hea=
lth
sectors (Universities, Ministry of Health).
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