Thalassemia and Sickle Cell disease are two different diseases affecting the same gene but having different affects. Thalassemia leads to an absence of adult red blood cells, whereas sickle cell disease leads to sickle shaped cells. This distinction is vital. Some patients actually have both thalassemia and sickle cell disease - but what you describe is probably due to sickle cell disease.
Zaini, our highly respected, caring and knowledgeable moderator - who while caring for her thalassemic daughter spends countless hours helping others on the site - was simply pointing out that 'typically' the amount of bone deformity you describe is not characteristic of thalassemia, therefore one should do further investigation to find out what other causes can be aggravating your bone problem - along with the thalassemia. This is important if you wish to resolve your problem. If you have sickling in your cells, chances are you have either sickle cell anemia or both thalassemia and sickle cell anemia.
Thank you sharmin for the very clear discription. And especially the differences.
I must share now that I do form sicklecells, known since i was 11. But no name yet.
The thalassemietest is also positive so far. 4 december they will have the exact results for the type. Can be thal Alpha and Beta!
So my story is truely for those how suffers sicklecell anemie AND thalassemie. That the outcome CAN BE painfull if your not on time with the right diagnoses.
I also wishes to contribute in this, because i KNOW how rare my outcome is.
Forgive me all for my impatience and calling out things. But i'm also al pal of yours all, sharing a very new thing (for me and all of medical world). Please try to be in my shoes and think how serious difficult is also is for me to fight for this serious damage caused by sicklecel AND thal (a of b).
I will keep this updated as soon as i have the result. So we can talk true options and support and sharing experiances.
With love Reyha