A young Saudi woman with a butterfly skin has made a bold stride to support those who have this rare skin condition, Arab News reported.
Abrar Al-Othman has launched the Butterfly Organization, the first organization in Saudi Arabia for Epidermolysis bullosa (EB).
Butterfly Skin Disease
Epidermolysis bullosa (EB), also called butterfly disease, is a rare genetic connective tissue disorder. This disease makes the skin fragile like a butterfly’s wings. Thus, the skin can blister and tear from even minor contact.
“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,” Dr. Hani Al-Afghani, a consultant oncologist and cancer geneticist at Security Forces Hospital Makkah, said.
Abrar Al-Othman
Al-Othman has been diagnosed with EB since her birth. She did not give up and continuously attempted to understand more about the disease.
Consequently, she revealed her identity a decade ago and turned to social media to send positive message for those who have the same condition.
Moreover, Al-Othman has written three books about EB serving as a significant reference for families and individuals to improve the quality of their lives.
She encountered various obstacles and challenges in her life. However, she remains positive and sends messages of hope to all patients.
The Butterfly Organization
Abrar Al-Othman has always dreamed to establish a nonprofit organization to support and improve health conditions for people with EB.
Now the dream has become true as Al-Othman has unfolded a new chapter of wide-range efforts after a long journey of personal initiatives and national programs.
The Butterfly Organization will basically raise awareness and provide resources and guidelines for families affected by this rare disorder.
Moreover, Hamid Al-Othman, Chairman of the Board of The Butterfly, elaborated the main goals of the organization in the following points:
- Raising awareness
- Providing assistance to patients
- Finding solutions
- Reducing the exacerbation of diseases for those who cannot afford treatment
First Event
Interestingly, Al-Othman has recently held the organization’s first community activity in Jeddah where they launched an awareness corner in a shopping mall.
“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,” Al-Othman said.
The three-day event highlighted the attendance of some patients and their families and supporting associations.
In addition, it underscored the importance of this support in improving patients’ quality of life.
The Butterfly board’s chairperson, Renad Al-Othman, stated that this week is EB Awareness Week and that the Butterfly organization is attempting 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,” Al-Othman added.
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