View Single Post
  #2  
Old Tue Sep 15, 2015, 09:47 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Hello Jackie8012,

Has your son been tested for dyskeratosis congenita? It is a rare genetic form of bone marrow failure that has many of the symptoms that you have described. Usually there is an abnormality of the nails as well.

It would be important to rule this out before making any treatment decisions. Since it is such a rare disease, it is important to be seen by an expert in bone marrow failure diseases/aplastic anemia. Where are you being seen? I know we have a few UK people here if you need recommendations.

I hope you find some answers.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote