Someone wrote me about my condition with a similar condition and I replied as follows...maybe it will help others...

Hey Ryan, good to hear from you. I haven't seen much traffic on the website so I kind of gave up. The problem with our condition is that it's very rare and so there isn't a support site, group, or interest for doctors and pharmacists to develop medicines. They wouldn't make a profit. Sad but true. How old are you? I've had it since I was 8 and I'm now 32. The redness in the face gets better with age but only to a point. The eyebrows do not get better. I've seen many dermatologists and university medical research centers. Nothing has worked or can be done about the eyebrows. I've tried scar cream, lotions, hydrocortisone, Rogaine, Carmol-40, and retin-A. Nothing works longterm. The bumps on the arms and legs will go away with Carmol-40 application once per day (dermatologist has to prescribe). It's basically a skin softener. I really don't care about the arms and legs though. The red face is better with application of Vita-K for Blotchy Skin in the morning and afternoon. You can buy that at Walgreens. It's good lotion. I think it just cools the face a bit and keeps the red to a minimum. If you want it gone, you can do that too. I went in to have IPL (light laser) done. Not much effect after 1 treatment. I recommend the PDL laser...stronger and your face will bruise for about 1 1/2 weeks but it seems to work. I need 1-3 more treatments to eliminate the red face mask. I have them approved but can't take off any more work this year to do it and recover unseen or I would. The best part is, I know everything out there now about my condition and somehow it makes me feel better about myself, which makes me less concerned and less red in public. Oh well, the university here took so many notes and pictures hopefully one day they will find the cure and I might have helped them do it. Whatever you do, don't get discouraged or lose hope. Talking to people who have the same condition is a wonderful thing.