[Lisa V]

I'm with Marlene. After a while we just started telling people he has a bone marrow failure disease. That pretty well gets the point accross, and avoids the confusion with iron deficiency anemia or the issue of what to call it since they found his chromosome mutation. AA or MDS, it's still bone marrow failure, and even if people don't understand exactly what that entails, it sounds serious.

We've also dealt with the issue of his not looking sick. After his first ATG people took it seriously for a while because he did look and act differently. Most of that was just the drug side effects though: puffy face and short temper from the prednisone; hand tremors, tiredness and loss of voice from the initially high dose of cyclosporine. Once we tinkered with his meds, he looked and felt much more normal, and everyone assumed he was "all better". I even had one person tell me "Gee, I heard he was at death's door, but then I saw him driving around!" Like he was faking it, or we were all being drama queens or something? I don't know. I just have to calmly explain that no, he's not all better, but he's undergone treatment, is currently stable on medication, and that we have a normal life, for the time being, anyway. If they want to know more, I'll tell them more, but these days it's not so much of an issue anymore because his counts are greatly improved and he really does feel fine. Hopefully he can continue like this for a good long time! Life is good again, but I don't forget what it was like for a while, and relapse is never far from the back of my mind.