Damian plus Sohana and her family explain what funding research means to families living with Epidermolysis Bullosa. With treatment trials started there is a real chance to improve the lives of children who are really suffering.
Cure EB (formerly Sohana Research Fund) exists to treat and cure epidermolysis bullosa an inherited genetic skin condition that leads to blistering and skin loss with the mildest trauma. It is “Hard to say. Hell to live with” and children and adults with the condition live in constant pain associated with the burn like wounds that occur. The intense pain and repeated damage leads to progressive disability and severe forms are life shortening due to a particularly aggressive skin cancer that develops in early adult hood. EB children and adults have tremendous courage and resilience which helps them cope with the unremitting pain – but what they want most is to have what most of us take for granted – a pain free life.