Call for Immediate Action to assist us
The Thalassemia Society in Ninava have met with the hospitals, asked many other regional health authorities, and the Ministry of Health, pleading for additional resources for thalassemia care. While the response has been sympathetic, there has been absolutely no chance in funding yet. Contributions with the Regional Health Authority resulted in a plan of action to treat our patients but there has been no fruitful actions on the plan . We are concerned that if this ignorance will continue. It puts all patients with thalassemia at risk.
The Thalassemia Society, and all families affected by thalassemia call upon the Ministry of Health for two things.
First : we request the Ministry of Health look into the the deaths of the young patients with thalassemia who have suffered over the past years. and, We need to know the reasons why our society was ignored in sharing thoughts and giving suggestions in any activity for contract signing with western parties who accepted to treat Iraqi patients.
Second : we request an immediate allocation of funding to the thalassemia program to allow patients to be transferred from the Society for Sick Children to any available treating program. There are currently about 200 patients qualified to receive treatment of stem cells over with different ages who are not able to find any possible solution to defeat the disease without such kind of foreign assistance.
posted by Ninava Thalassemia Society @ 9:40 PM
3 comments
3 Comments:
I think you should consider the "Northern Comprehensive Thalassemia Center" in Oakland, California (link) as a potential source of assistance. Among other things they maintain a list of contact information for Thalassemia soceties in other countries including in Turkey, Iran, Jordan and Israel but NOT in Iraq. What little I can tell from looking at their website suggests they may be ignorant of the Mosul Thalassemia society. I recommend tht you contact them. Try to be sure that they understand that there is a problem in Mosul and that you need assistance there. I also recommend tht you try to establish communications between them and the doctors of the thalassemia clinic in Mosul, because doctors will be best able to explain their problems and the specific types of assistance they need.
I also recommend that you contact the thalassemia societies in neighboring countries (Jordan, Turkey, Iran, AND Israel) because transportation of patients to these countries for treatment may be easier than transportation to more distant places (and the same applies to medical supplies). Again, I recommend that you try to assist doctors talking to doctors because doctors understand each other.
I hope this helps.
Waldchart
I have been trying to understand thalassemia, studying information available in English at thalassemia.com and some of what I have learned frightens me a bit.
It is an inherited disease. The only way to prevent it is to test DNA and try to be sure people who carry the genetic trait as a recessive do not marry each other. This is a cruel truth.
Bone marrow transplant is not a "magic bullet". It kills one of every 20 children and one of every three adults who get the treatment, and it will only work IF there is a brother or sister who is a suitable marrow donor or IF there is very good luck finding a perfect match in a donor bank somewhere (this is a low probability).
Italy is the place bone marrow transplants were perfected and Italy, not America, is the best place to send children for transplants if what I read is correct.
Transfusions can control the disease, but transfusions also pose a potential risk of infection and cause iron to build up in a patient's body to toxic levels.
A drug called Desferrioxamine (Desferal) is used to control iron buildup in the bodies of thallasemia patients but this drug can cause side effects including ringing in the ears and deafness.
What a cruel disease this is. It makes parents see themselves as the cause of their own children's illness, it kills children who are not treated, it requires children to accept unpleasant treatements, and those treatments may cause further problems which will kill if not controlled, and there is no "magic bullet" to eliminate the disease, only a desperate and expensive procedure that is possible for some patients but not others and sometimes kills instead of curing.
It concerns me that the fight against thalassemia in Mosul, Iraq is so poorly described in English on the web. Most of the posts in this blog are in Arabic, and the information at ninavaha.com (some sort of half-finished web site related to the society) is entirely in Arabic except for the title of the assocation on the home page and what looks like some email addresses for contacts on the "community members" page.
English is supposedly the international language of commerce and science, the language doctors and engineers in every country study to communicate with people elsewhere in the world.
Let us say it as clearly as possible in English for all the world to hear: There is a battle going on in Mosul, Iraq at a place called Ibn Al Atheer Hospital against a cruel, remorseless enemy called "thalassemia". The people fighting this battle are not soldiers or "freedom fighters", they are doctors and nurses. The chaos in Iraq is making things difficult for them. They need a little help from the world. I can not say exactly what they need, I can not say exactly how to get it to them, but I can say that it seems like these are the real good guys and we, every citizen of the world, should be on their side and try to do what we can.
Waldchart ,
Thanks your attention , this is our original site now , that website was ignored because of staff changing.
Yes we are agree that english is the original english that could help but also our society members needs arabic news .We will try to improve the web site as soon as we have enough time.
Next saturday , six patient's famies will travel to Italy for treatment , this is supposed the first group and hope others will follow them when Italy accepts other patients on schedule.
We are fighting disease here and doing our best to achieve best results for our patients.
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