I have this as well , am 20 was diagnosed at 14. I have been to many doctors with no hope of cure. Was recommended to NYC to a lazer treatment office. They used painful refractor lasers basically burning my skin to create new skin in hope for some answers . I did this for 5 months each time treating new skin with new lasers and heats. The biopsies after this time period showed no change in the skin. I know how devastating this disease is but i just want you all to know i have seen the doctors working their asses off to find a cure. I put myself through hell for those months just trying to get some answer. We have to keep trying and experimenting to help others .