Discussion Forums > Thalassemia Major

Financial assistance for Thalassemia patients.

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Andy Battaglia:
Treatment is Albania is rudimentary at best. Blood and desferal only, and the safety of the blood supply is suspect. Thal children need regular testing and observation and as they grow, things like hormonal treatments may be necessary, depending on how well chelation has gone. As Antonella gets older, she will need care that will not be available to her in Albania, but is readily available in the US. The comprehensive care programs followed by the major thal centers in the US are light years beyond the treatment found in eastern Europe. Things like liver MRI's and bone density scans are a must for assessing a patient's health.

The difference in care can be summed up in this sentence. In the US, thal is treated as a manageable chronic disorder and in Albania it is basically an eventually fatal illness.

Baron6:
Andy,

Your information has been so helpful.  You have definately fueled our compassion for this little girl.

Do you or anyone else know what kinds of developmental issues thalassemia might cause ie. growth, mental, motor etc?  Can kids with this disorder be picked out in a crowd as having Thalassemia based on appearance, physical ability etc.?  I have read a lot of the internal effects and have not noted much about any external ramifications.

This site has been one of many blessings we have experienced on this journey.

Thank you so much.

Andy Battaglia:
Untransfused or under-transfused thals will have skeletal malformations due to the expansion of the bones. This is due to the excessive bone marrow activity that occurs when the body tries to manufacture more red blood cells. The bone marrow increases, which expands the bones. This is often noticeable in protruding teeth and foreheads and can also cause damage to the bones throughout the body, rendering them much weaker than normal. Sufficient transfusion will prevent this from happening. Thals also tend to be shorter in stature but their mental development is normal and you will find that thals are often higher in intelligence than average. Perhaps the greatest danger to thals is the accumulation of iron that takes place from frequent transfusions. This can lead to developmental problems along with organ damage. Diligent chelation can prevent this also. With current treatments, so many of the problems of thal can be avoided or minimized. The prognosis for a thal today is much better than ever before and with compliance to treatment, a thal today can expect to live into their 50's or even 60's, with the lifespan constantly extending, due to improvements in treatment.

ThalGal:
Welcome Baron6,

As always Andy is right on :yes

With proper medical treatment and love Antonella will thrive.  I salute your compassion and willingness to take this journey. 

A question to ask Eva Chin-Li at CAF, would be if she could put you in communication with other families who have adopted children with thal.  A few have attended the annual TAG (Thalassemia Action Group) conferences.

This is a wonderful event to attend (sponsorship is available for this event), Drs from the thal centers present medical information, there is a parent sessions where parents share information, etc. there is a children’s session where they play games, do arts & crafts, and they could ask questions about the pump, transfusions, medicine etc. 


God bless.


ThalGal

jzd24:
Baron6 - It is amazing that you are adopting a child with thal major. You will have a profound impact on the quality of her life. I think ThalGal's idea of contacting others who have adopted already is really a good one. I met such a couple at the only TAG conference I attended. Good luck to you, Jean

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