Phoebe has Recessive Dystrophic Epidermolysis Bullosa. This is a rare genetic inherited lifelong condition in which the skin is fragile and will blister or shear away with minimal friction and trauma.
Blisters are not self-limiting and will enlarge unless lanced and drained. It affects other mucosal membranes such as eyes, mouth and oesophagus causing painful blistering and scaring as healing occurs. Raw areas are dressed with specialist dressings and can be very painful requiring oral pain relief.
The condition is life-long, there is no cure and treatment is symptomatic.
The Phoebe Research Fund hopes to help sufferers by funding essential research carried out by Professor John McGrath. There are two main types of research for this type of EB made up of stem cell and gene therapy.
With your help we can make a cure possible.