Until now there are no drugs for Thalassaemia totally. To keep up the stamina and healthy for Thalassaemia mayor patient is by blood transfusion regularly once in 4 weeks. Generally, children who did this transfusion grow normally and live happily until twenties. But for longer life, they need another treatment.
It was said by Minister of Health dr. Endang Rahayu Sedyaningsih, MPH.Dr.PH in celebrating a world Thalassaemia Day in Jakarta, May 9, 2010.
Minister of Health said that Indonesia including in high risk group of Thalassaemia. Prevalence of carrier Thalassaemia in Indonesia was about 3-8%. If Thalassaemia percentage was only 5%, while birth rate was 23 per 1.000 from 240 million populations, it is predicted there will be 3.000 infants had Thalassaemia every year.
See the highest of Thalassaemia prevalence rate in Indonesia, Thalassaemia become a serious community health problem because this screening of this carrier properties of blood disorders in vary population showed a relative high rate.
Minister added that in some population, the carrier properties of Thalassaemia was relatively high reached 10% and 36% for Hb-E, with prevalence vary in every community group. The most main problem is that clinic management of Thalassaemia disease was not well distributed in Indonesia, if comparing with developed country even in ASEAN country.
“Until now, only Jakarta which had a special service center for Thalassaemia, which only can be beneficial for a half of patient. Infact, without a serious clinic handle, patient of Thalassaemia major is seldom to reach until adult age,” said Minister.
Minister added that now its time Thalassaemia has a special attention and now it put in proper proportion in National Health Service system. This disease preventive and control action need to be socialization to community by still be based on our ethics value, moral, and our nation custom.
Even though there is no medicine for it, it still can be done a prevent and control action for Thalassaemia. One of them is to form Thalassaemia Work Group in National and Regional level, by involving experts, consist of pediatric specialists, internist, Clinical pathology, Genetic, gynecologist, midwife, nurse, even if needed it involving Psychology, Social worker and parent representative of the patient. Besides that, it needs to form a facility of pre married counseling cooperate with office of religious affairs, for bride potential of Thalassaemia to do laboratory examination. The same activity in Iran showed the decreasing of patient numbers until 1 per 100.
By the existing of Thalassaemia work group, it is hoped that they can implementing a routine scientific meeting whether in local or regional level, evaluating, and observing the existing problem, and giving information about policy and some steps that should be taken to control Thalassaemia for related institution or Ministry of Health.
Thalassaemia is hereditary disease which it shortens blood cell aging than normal blood cell (120 days). While the cause of Thalassaemia is blood cell has no enough hemoglobin because there is an abnormality or changing in one of part of hemoglobin gen.
This information is released by Center for Public Communication, Secretariat General MOHRI.
Minister of Health said that Indonesia including in high risk group of Thalassaemia. Prevalence of carrier Thalassaemia in Indonesia was about 3-8%. If Thalassaemia percentage was only 5%, while birth rate was 23 per 1.000 from 240 million populations, it is predicted there will be 3.000 infants had Thalassaemia every year.
See the highest of Thalassaemia prevalence rate in Indonesia, Thalassaemia become a serious community health problem because this screening of this carrier properties of blood disorders in vary population showed a relative high rate.
Minister added that in some population, the carrier properties of Thalassaemia was relatively high reached 10% and 36% for Hb-E, with prevalence vary in every community group. The most main problem is that clinic management of Thalassaemia disease was not well distributed in Indonesia, if comparing with developed country even in ASEAN country.
“Until now, only Jakarta which had a special service center for Thalassaemia, which only can be beneficial for a half of patient. Infact, without a serious clinic handle, patient of Thalassaemia major is seldom to reach until adult age,” said Minister.
Minister added that now its time Thalassaemia has a special attention and now it put in proper proportion in National Health Service system. This disease preventive and control action need to be socialization to community by still be based on our ethics value, moral, and our nation custom.
Even though there is no medicine for it, it still can be done a prevent and control action for Thalassaemia. One of them is to form Thalassaemia Work Group in National and Regional level, by involving experts, consist of pediatric specialists, internist, Clinical pathology, Genetic, gynecologist, midwife, nurse, even if needed it involving Psychology, Social worker and parent representative of the patient. Besides that, it needs to form a facility of pre married counseling cooperate with office of religious affairs, for bride potential of Thalassaemia to do laboratory examination. The same activity in Iran showed the decreasing of patient numbers until 1 per 100.
By the existing of Thalassaemia work group, it is hoped that they can implementing a routine scientific meeting whether in local or regional level, evaluating, and observing the existing problem, and giving information about policy and some steps that should be taken to control Thalassaemia for related institution or Ministry of Health.
Thalassaemia is hereditary disease which it shortens blood cell aging than normal blood cell (120 days). While the cause of Thalassaemia is blood cell has no enough hemoglobin because there is an abnormality or changing in one of part of hemoglobin gen.
This information is released by Center for Public Communication, Secretariat General MOHRI.
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