Ellen,
It's great that your counts seem to be going up even as you taper off Cyclosporin. It makes sense that they would, because your marrow is less suppressed with a lower dose. Still, it can be nerve-wracking to remove a medication that has helped you do so well since your ATG treatment. The conventional wisdom about tapering Cyclosporin is to do it very slowly--even taking 6 months to a year to get off the remaining 50 mg/day would not be unheard of.
How did you find out about your 1p36 chromosomal deletion? Was it through a followup bone marrow biopsy for your SAA? There is a known syndrome related to this deletion (see
http://en.wikipedia.org/wiki/1p36_deletion_syndrome) but it does not seem to have bone marrow failure as one of its symptoms. I can understand wanting to know if there is familial connection by having your mother tested. However, assuming she a woman well into her 70s, what would you hope to gain by knowing if she has the same mutation? If her health is currently unaffected, the results of genetic testing could adversely affect her sense of well-being and cause needless worry since it's unlikely that anything proactive could (or should) be done.
I've met and worked with Dr. Maciejewski through the AA&MDSIF. He is involved in research related to bone marrow failure diseases and would, I'm sure, respond to your questions about a possible link between 1p36 and SAA.
Regards,
Ruth