Stuck_in_a_daydream

Have your symptoms improved as you’ve gotten older?

My brother has EB. His skin has toughened up immensely in adulthood. Now, he seems to get lesions only in areas of high friction or where his skin is super thin, like his eyelids.

Back in my hometown in the 90s there was a guy who an exotic animal farm with a whole bunch of tigers. He was arrested and jailed for hiring an undercover police officer to kill his girlfriend’s husband. At the time of his arrest he was also being investigated for the disappearance of an ex girlfriend’s boyfriend in the 80s.

https://www.chicagotribune.com/news/ct-xpm-2001-02-21-0102210369-story.html

My brother has dowling-meara EB. It was pretty bad when he was a kid. He ended up getting a couple of toes removed. However, now, I would say EB is very mild. I feel like we are some of the lucky ones. Several of the kids we grew up with that knew through support groups have died.

That’s interesting about your hair. My brother is 36 and completely bald. No else in my family is bald. It makes sense that it is from the EB.