Discussion Forums > Thalassemia Major
Financial assistance for Thalassemia patients.
sydneygirl:
Hi Baron6,
Thats great of you wanting to adopt,there needs to more people like yourself out there!
Just from reading your post i gathered i think they meant her treatment was less then what she really needs,means in albania she probably isnt getting the best care there and probably more could be done for her but from what i know albania is a poor country & going to Americia she will probably recieve better treatment there & therefore will be in better health & she can have a long lifespan if all her treatment & medication is done from an early age and all the time,dont let thalassemia put you off adoption.Thalassemia patients these days with proper treatment can live till there 50 or 60.
Baron6:
Please confirm this information from a source on international adoption.
She says children with Thalassemia, that is undertreated, are ALWAYS growth retarded. The fact that our little girl is tall means she may be older than she is.
She says Thalassemia eventually leads to diabetes and liver failure in the 20's and 30's both which can be treated but complicate life.
She says Thalassemia results in delayed puberty or issues with puberty in general.
Please let me know if this information is accurate.
Thanks!
By the way I did find out the answer to the original question about finances, there is assistance available and her care should not cost us anything at least until she is 18.
Andy Battaglia:
Those statements about thalassemia are true ONLY when the patient is under treated. The fact that she is tall may mean she has been properly transfused. It is the lack of blood that is the biggest impediment to growth when young. Diabetes and liver failure are both a result of iron overload and both can be avoided with proper chelation. Delayed puberty is also a result of iron overload and its effect on the pituitary gland. Chelation compliance is absolutely necessary for good health in thalassemics. Recent research shows that diabetes can even be reversed in thals if caught early enough and intense chelation intervention takes place. I can show you thals in their late 30's with very low liver iron concentrations because they chelate and keep their iron so low.
It is so frustrating to see the incorrect information given out by so many people, including doctors, about thalassemia. Treatment for thal has changed dramatically in the last 3 decades and the lifespan of thals has also lengthened by decades. With compliance to current treatment, a thal can now live a long productive life and even having children is no longer impossible. We have several thal majors women in this group who have 2 children.
And the future looks even brighter with trials for a gene therapy cure on thals ready to begin in the US next year, and also continuing research into new and better and safer treatments taking place.
ThalGal:
Hello Baron6,
From my perspective I would say this info is pretty much very basic and old text book info.
IF untreated, yes, the chances are high of being short stature. Iron overload with out proper chelation therapy does affect the organs - heart, liver, and pancreas.
Here is a link to “About Thalassaemia” published by the Thalassaemia International Federation; Eva Chin-Li may have a hard copy to mail to you.
http://www.thalassaemia.org.cy/MyData/Books/About_Thalassaemia.PDF[/url]
There are patients in their 50s & 60s, there are patients who are professionals, married with families. With proper treatment and strong family support anything is possible.
Also, check with you State for eligibility for disabled children - Social Security Disability.
Andy Battaglia:
Eva Chin sent me many of the excess thal books when CAF moved. I've got tons of books but no money for postage. If anyone in the US wants any of these books, message me. If you can pay the postage they are yours. The books are:
About Thalassemia
Guidelines for the Clinical Management of Thalassemia
Prevention of Thalassemia and other Hemoglobin Disorders
All are published by TIF.
If you send me your zip code and which books you want I can tell you the postage.
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