Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. EB is always painful, is often pervasive and debilitating. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available. EB affects 1 out of every 20,000 live births and those born with it are often called Butterfly Children because as the analogy goes, their skin is as fragile as the wings of a butterfly.
The life expectancy of butterfly children:
Wounds caused by the disorder may never heal and they are prone to life threatening infections and the death in infancy can occur from infection. In the more severe recessive types, death from skin cancer is common between the ages of 15 and 35 but, in the milder, dominant forms, life expectancy is unaffected.
The difficulties of butterfly children in Iran:
– Educational system has not cooperated with them and does not allow them to study alongside other students in school, and this is one of the main problems of patients with IBE.
– They receive only a certain number of bandage packages for free. These dressings are scarce and cannot find them at the pharmacies,
– The cost of each sheet of bandage is about 30 dollars, which lots of patient cannot afford.
– In addition, they need to pay 50 to 100 dollars per month for the ointment and pills.
Mahour Group is a non-profit organisation which support these kids in Iran by raising donation and provide ointment, pills, bandage and all other requirements for them. Just $10 can provide one cream to reduce one kid’s pain.
Thank you in advance for your help.