reaching out

I was diagnosed with May-Hegglin when I was 17 years old under some very interesting circumstances. I had an emergency surgery. My platets dropped to only 11,000 yet I had no bleeding out. The doctors were baffled and sent me for testing. Since that time my platets have never numbered higher than 70,000. I was tested for any and everything you could imagine and the Dr finally decided that I had MHA. Ok, the twist is that even though this is a genetic disorder, the tests on my family were all negative. So I was declared as a new mutant, yes wonderful for a teen.

I don't know another single person that has this disorder. The older I get the more questions I have. I will be turning 40 this year and I really would like to have atleast one person to compare conditions with. I have always bruised easily and I understand that part of the disorder but I have noticed that as I age common activities bruise me that didn't when I was younger. For example, some door knobs bruise my hands when I turn them, Bottles and jars are getting harder to open because of bruising, not because of strength.

I would like to know if that is normal and to be expected when aging with this disorder.