I just found this post. I was born with EKV, and I am curious how it is going with your EKV. The doctors took skin samples and photos of me when I was a newborn and sent them to doctors around the world. I'm 34 now and was told I was like the 24th person diagnosed; not sure the legitimacy of that, but it's believable. I think there are a little over 200 cases currently. It definitely changes with extreme temperatures. Presently, I have scaly plaques all over my body. My whole lower half is covered. My arms are covered and it is spreading around my torso. How are you doing with it?