Yasmin ElSamra left a legacy

By Yasmin ElSamra, Epidermolysis bullosa dystrophica, Egypt, February 6, 2021

Yasmin ElSamra & mama hanaa elsadat

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.
(www.yasminelsamrafoundation.com)

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Infantile Neuroaxonal Dystrophy (INAD) Infantile Neuroaxonal Dystrophy (INAD)

Alice from Brazil is living with Infantile Neuroaxonal Dystrophy (INAD)

Isabela, Infantile neuroaxonal dystrophy, Brazil, August 23, 2021

My name is Isabela, I am Alice's mother who is 3 years old. We are from Brazil!Alice had her normal development until she was 18 months old. Alice sat alone, crawled and walked with support. After she...

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Mia Mia

Mia

Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

SuperBouli SuperBouli

Story of SuperBouli

BOULI, Sandhoff disease, infantile form, Lebanon, February 27, 2021

SuperBouli for rare disease day 2021Read my story or watch the video to know why I am superRarehttps://youtu.be/Rw4hV_sk6VQHello!!! I am Bouli, and this year, on the 28th of February, the rare disease...

Photography credit: Oumayma B. Tanfous Photography credit: Oumayma B. Tanfous

Keep on Smiling

Maria, Beta-thalassemia, United States, February 25, 2021

Keep On Smiling“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemi...

On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling. On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling.

"Juvenile ALS" occurs in less than 1 out of 1 million people

Bibi, Amyotrophic lateral sclerosis, Austria, February 24, 2021

Hi, I’m Bibi, 32 years old, from Austria (Europe) and was diagnosed with ALS (Amyotrophic Lateral Sclerosis) at the age of 18.My first symptoms started to show in 2005 when I was 16 years old. I notic...

Hagamos visible las enfermedades raras... Hagamos visible las enfermedades raras...

Nahiara... el amor en persona

Claudia, Williams syndrome, Argentina, February 24, 2021

Mi nombre es Claudia, mamá de Nahiara,  ella fue diagnosticada a los 7 meses de edad con Síndrome de Williams, una detección en el cromosoma 7q11.23. Dentro de las características principales de éste ...

Palden and Mom Palden and Mom

The Glimpse into Palden's Journey as the First SMA Patient of Bhutan

Ugyen, Spinal muscular atrophy with respiratory distress type 2, Bhutan, February 22, 2021

Palden is a 12 year old girl from Bhutan. She was diagnosed with Spinal Muscular Atrophy (SMA), Type II, at the age of 9 months, as the first case and one of the only two diagnosed in the country. SMA...

Laurenne in Wellington Laurenne in Wellington

You have what now?!

Laurenne, Panhypopituitarism, Hypogonadotropic hypogonadism, New Zealand, February 10, 2021

Hello to everyone reading this, my name is Laurenne, and I was born with congenital Panhypopituitarism (CPHP), and Hypogonadotropic hypogonadism (HH)It briefly means that all the hormones that a funct...

Yasmin ElSamra & mama hanaa elsadat Yasmin ElSamra & mama hanaa elsadat

Yasmin ElSamra left a legacy

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 C...

X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.