[jobra818]

My time has not been easy and I am looking for support w/ people that have suffered like myself. In 1988 at age 12 (female), I was dx w/ severe AA and was given a 10% survival rate. I did not have a bone marrow match so it was on to ATG w/ androgen (oxymethalone) therapy. In 8-9mos. I showed enough of an improvement that the transfusions I was having 2-3x a wk stopped. By 1990 I was able to start participating in gym class. I did well until the spring of 1992 when I contracted the chicken pox and later was dx w/ ITP adding cyclosporine to my list. In the end of 1994 oxymethalone was being discontinued by the drug companies and it was on to find another drug. A year and a half later Danacrine did the trick. Up until 2004 I have been taking high doses of Danacrine with a low dose of cyclosporine w/ normal blood counts. I started to lower the dose of Danacrine to find that it was going to stop working all together and my counts dropped like crazy. Dr's increased the cyclosporine and are weening me off of the danacrine altogether. That brings me to the fall of 2007 w/ a new dx of PNH treated w/ coumadin and adding that to my repertoire. Two yrs after my counts dropped they are back to normal but now I have to lose weight from what I gained. It is very hard to keep weight down when you feel lethargic 24/7. Needless to say being on androgens for the past 20yrs. does nothing for a social life. I have a deep voice, muscular, and have been mistaken for a man on several occasions. I have always tried to let that sort of stuff go but after 20yrs of dealing w/ an illness where you know no one that is suffering w/ the same thing becomes very hard. I have always been a fighter but some of the fight feels like it is fading. I am very glad that a volunteer from AA&MDSIF led me to this site, thank you.