Epidermolysis Bullosa (EB for short) is a rare group of genetic skin diseases, causing blistering and shearing of the skin from even the slightest touch as well as spontaneously. All forms of EB are genetic and the genes responsible for most subtypes are now known; however, some still await identification. The genetic defect results in the skin cells collapsing or skin layers not adhering properly to each other, causing areas of structural weakness.
A National Epidermolysis Bullosa Registry reports 50 EB cases per one million live births. Tatum's form of EB is classified as Recessive Dystrophic Epidermolysis Bullosa (RDEB for short). It is the most severe type of EB, causing blisters over large body surfaces, loss of nails, atrophic scarring, milis, itching, anaemia and growth retardation. Tatum has all of the above. This form of EB will also lead to serious eye inflammation with erosion of the cornea, early loss of teeth due to decay, as well as blistering and scarring inside the mouth and gastrointestinal tract. Finger and toe fusion, as well as loss of mobility, is a reality for those suffering from EB.
There is currently no cure for EB. The only treatment at this time is performing daily bandage changes, and prevention of infections and trauma to the skin. Many food and nutritional supplements are needed every day to help Tatum's body keep up with healing. Even with all of these precautions, children with RDEB are at high risk for metastatic squamous cell carcinoma. This skin cancer is the most common cause of death for those with RDEB, usually between the ages of 15-35.
Awareness of EB is important, because more awareness will lead to more funding, which could one day lead us to a cure for this painful disease. If you would like to help, you can contact us or visit DEBRA Canada, the research organization in Canada. All donations will go towards research to find a cure for this devastating disease.
There is currently no cure for EB. The only treatment at this time is performing daily bandage changes, and prevention of infections and trauma to the skin. Many food and nutritional supplements are needed every day to help Tatum's body keep up with healing. Even with all of these precautions, children with RDEB are at high risk for metastatic squamous cell carcinoma. This skin cancer is the most common cause of death for those with RDEB, usually between the ages of 15-35.
Awareness of EB is important, because more awareness will lead to more funding, which could one day lead us to a cure for this painful disease. If you would like to help, you can contact us or visit DEBRA Canada, the research organization in Canada. All donations will go towards research to find a cure for this devastating disease.
