"Its like my whole body is on fire and I have ants crawling all over me. Its so overwhelming and no one without EB can understand how bad the itch actually is."

Maya

"There have been times when I've just had enough when getting up in the morning is the last thing I've wanted to do. I've felt like I don't want to face the world because I've had enough to deal with as it is."

Henry

My wounds are like second degree burns, they never heal. They are incredibly painful. Over the years because of scarring my hands have fused together and become mitten like. I have to have surgery to open them up. I dont want to be seen as a victim. I want to #FightEB for better wound care.

Myra

Its awful as a parent to see the unimaginable pain that Mason goes through each day his bravery is remarkable. To avoid infection I need to change his dressings, which is another three hours knowing Im inflicting pain on my own son. Any advance in pain management would change his life and mine, please #FightEB."

Rod, Dad to Mason