JEDDAH: A young Saudi woman with a rare skin condition has realised her dream by founding a nonprofit organization dedicated to improving the lives of those affected by epidermolysis bullosa, commonly known as “butterfly skin.”

Abrar Al-Othman, who was born with this genetic disorder that causes painful blisters from even minimal contact, revealed her identity a decade ago and turned to social media to spread positivity. She has written three books about the disease, hoping to inspire others who face similar challenges.

Despite the obstacles she has faced, Al-Othman saw an opportunity to make a difference for this patient population and expand her efforts from personal initiatives to national programs.

With the support of her father and sister, she established “The Butterfly” organization to raise awareness and provide resources for families affected by this rare disorder.

Arab News met Al-Othman, 29, at the organization’s first community activity in Jeddah over the weekend, where they set up an awareness corner in a shopping mall.

She said: “The Butterfly organization was founded three months ago, and here we are witnessing its first activity. Yes, it is a dream come true for me because I have been raising my voice alone, but now I have a strong support team to help spread the message about the disease and support patients living with butterfly skin.”

Patients and their families attended the three-day event, along with a few supporting associations, highlighting the importance of this support in improving patients’ quality of life and raising awareness about the disease. This community activity coincides with Epidermolysis Bullosa Week.

The Butterfly board’s chairperson, Renad Al-Othman, said that this week is EB Awareness Week and that The Butterfly organization, which provides hope and support for EB patients and their families, is working to combat the disease by creating a butterfly effect in the community through its social media platforms and events like this.

“This is the first activity of our new organization, which is considered as the first in the Kingdom to provide hope and support for EB patients and their families,” she said.

Hamid Al-Othman, chairman of the board of The Butterfly, said that the aim of establishing the association was to raise awareness in the community and provide assistance to patients in finding solutions and reducing the exacerbation of diseases for those who cannot afford treatment.

Dr. Hani Al-Afghani, a consultant oncologist and cancer geneticist at Security Forces Hospital Makkah, told Arab News: “Most people may not know about epidermolysis bullosa, but it is hard to forget once you see it. Currently, there is no cure for the disease.”