[Ellen McDonough]

Hi
I have some questions.
I am almost weaned off of Cyclosporin now -[25mg twice/day]total-50mg. It has been since July 2009 since I recieved horse ATG for my SAA. I have counts done 1 /month.My counts this month were incredibly GREAT!!!! WBC-3.2 Hgb-13.8 and platelets 120.Platests have NEVER been close to that high as I usually run in the 80"s-90"s. We recently started up the taper again since holding steady from last spring. Is it possible to have improved counts when weaning Cyclosporin? It doesn't make sense. If almost 4 years out from ATG treatment is it still kicking in?
I also found out recently that I have a 1p36 chromosomal deletion and my son has the same 1p36 deletion. He is being followed by a pediatric geneticist. I am awaiting to see genetics clinic.
I just wonder my BMB aspirates are also normal when tested for chomosomal abnormailites.But am wondering about some genetic mutation in my family since my son has the same deletion.My siblings refuse to be tested .Sister has multiple sclerosis and currently a 6 cm mass in her brain being worked up. I am trying to convince my mom to have genetic testing done.
Are there other SAA survivors with genetic deletions out there?I just wonder if it might be a cause in my disease? I have been tempted to email this Dr at Cleveland Clinic -Dr Jaroslaw Maciejewski.Anyone had any contact with him?
Thanks and i would love to hear from you.
Ellen McDonough