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StephM;:" thanks for your answer. I read a lot these last weeks but I don't know much about this PNH clone thing. And how dangerous it can be. And if you can get rid of it. It seems to be quite common in SAA
Steph,
I understand what you are going thru. I feel for your heartache. I hope this will help explain a few things about PNH.
Once you have PNH it rarely goes away. The PNH cells are made with a missing part on the cell. Without this piece, the compliment portion of the immune system easily destroys the cells. The degree of danger is usually directly related to the clone size. If they test your brother, the lab will report it by the number of cells effected. The higher the percentage of cells effected, the more cells can be easily destroyed by compliment, the more side effects can be seen. Please let us know if your brother is tested and if he is positive. They monitor the PNH cells thru a blood draw, not a bone marrow biopsy. If your brother would happen to have PNH, there are certain tests the docs need to order to monitor his bodies response to PNH.
The Aplastic Anemia MDS Foundation website has excellent webnars explaining PNH. They are worth your time.
Remember: we are here for you
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