The CGD Café

I was diagnosed with skin lupus in 6th grade and I am a carrier of CGD. You may think I am crazy, but I am able to keep mine under control by going in the tanning bed. For whatever reason, the tanning bed keeps my lupus at bay. I don't have it in my blood. I tried all kinds of creams from the doctors and none seemed to work. If I get burnt out in the real sun my lupus will flair up. If you wear make up, which I do, be sure it has an SPF in it. I know that tanning bed seems to make no sense, but it works for me.

Hi i have dicoid lupus which is the skin condtion.  i was also tested for the blood lupus and tested negative for it i am a carrier and my mom also is and she also has dicoid lupus too and it really sucks i can not be out it thr sun for very long berfore i look some one flicked me all over my body it is the worst on my face chest and now it has begun to develop on my neck and shoulders i get a med from my doc and it seems to help but i have a few spots on my face that never really go away.  good luck with getting it under control the biggest problem is staying out of the sun my kids are very active and love to play outside i put on the highest spf sunscreen and it still doesnt help a little but not enough for me to feel confident to wear cute little tank tops or summer dresses so good luck to you.  oh and i had a biopsy on a sore that wouldn't go away and that was how i was diagnosed with dicoid lupus.

My sister has CGD and has the skin lupus. She has red blotches on her face, neck, chest, and back areas. I don't know much detail about it on testing.

Karen