The CGD Café

Hi all,

I've been poking around this site off and on, back on the old discussion boards and now this new site, but I don't think I've ever posted anything (maybe a long, long time ago?) so I'll (re)introduce myself.

My name is Anca, I'm 25, technically a CGD carrier, being treated as if I have it because of the low % of functioning cells (taking levaquin & itraconozol). No one in my immediate family has CGD or is a carrier; 
the only early death in the family had been attributed to MS (my maternal great-uncle). I also have discoid lupus, and SLE has been a question mark for a long time. I started taking plaquinil for that a few months ago and it seems to be helping with the discoid lupus. 

I'll be going down to NIH at the end of June. Usually I go with my mother (and she is coming) but this time I am bringing my fiance too (we just got engaged in early April-- my dermatologist likes to think it was due to the plaquinil). I've explained CGD to my fiance as best as I can, and he seems to get it, at least from my understanding and is very supportive.  But it will be interesting to see how our visit goes and also to see the Children's Inn, which will be the last year I can stay there (I was pleasantly surprised that I can stay there until age 26!).

Anyway, that's it for now. I could probably go on. Maybe I'll write a book one day, who knows, ha...