By Yasmin ElSamra, Epidermolysis bullosa dystrophica, Egypt, February 6, 2021
Epidermolysis Bullosa (EB) is a genetic condition that causes the skin to be fragile, blistering easily. Blisters and skin erosions form in response to minor injuries or frictions. Mutations in the COL7A1 gene cause all three major forms of dystrophic EB. It is a rare skin disease with no cure. EB is always painful, often pervasive, debilitating and in some cases lethal before the age of 30.
Yasmin ElSamra was born with RDEB in 1997 and passed away 2012 with the age 15 years old.
Yasmin tried to lead a normal life, despite her disease. At the age of 5, we discovered her talent in drawing, and encouraged her first drawing exhibition at the age of 9. She spread awareness about EB through three exhibitions during her short lifetime and was known as the youngest Egyptian artist. She donated revenues from her paintings to governmental hospitals for research.
After she passed away, I established a charity foundation under her name for EB patients in Egypt, to spread awareness, provide medications, pay for hand and teeth surgeries, blood transfusions and to recommend qualified doctors in different fields who are able to deal with EB cases. EB is not covered by any medical insurance.
Starting with 10 cases in 2014, today I have 170 cases in 2020 of all genders, ages 0-35, including some cases from different Arab Countries.
Yasmin Al Samra Charity Foundation is the first in Egypt and the Arab countries that supports and makes awareness to families of these EB patients and helps them with moral, recreational support and encourage the development of their talents.
EB patients are referred to the foundation by dermatologists that trust we can make awareness and teach mothers how to handle their children, as well as, offer them all medical needs.
Based on my experience as a mother of EB Yasmin, I had the feeling that their pain was different from the pain we feel. It is their mind and the way people perceive them because of their appearance and disability when they integrate in Society.
I addressed this in through good nutritional advice and psychologically, through drawing, crafting, story writing, dancing and participating in charity bazaars, drawing competitions and encouraging them to handle small businesses, to earn their own money and feel that they have the right to live happily.
Conclusion, we see their wounds and blisters decreasing, as they spread awareness about their illness with pride, while their lifestyle changes for the better.
We feel happy when we relieve their pain and see the smiles on their faces, giving them hope that one day there will be a cure.
Now, we represent Debra international organization in Egypt (www.debra-international.org)
Yasmin’s mission and her foundation will always leave a lasting legacy.