In memory of Myra Ali Saeed

Myra Ali

Our family is deeply saddened to inform DEBRA members that on the 18th of October 2023, Myra Ali Saeed, a beloved member of the EB community, passed away at 35; her funeral was on 19th of October. After graduating from the University of Birmingham with a bachelor’s degree in Classical, Ancient Mediterranean and Near Eastern Studies, Myra became an entertainment journalist, interviewing A-list stars and writing for the likes of British GQ. Myra valued family above all; she loved to spend time with her mum, siblings, and friends, as well as her two cats and dog, Gaston. Many will remember Myra for her willingness to support anyone in need and her ability to create meaningful connections with those who met her. 

Myra was a regular speaker at DEBRA events, helping to spread EB awareness by sharing her story of living with RDEB (recessive dystrophic epidermolysis bullosa) and fundraising. She was a powerful advocate for those living with EB. Myra was an expert in communicating the daily challenges and pain of living with RDEB and conveying why critical support was needed to fight EB. One great example is her interview with boxer Tyson Fury, discussing mental health and how Tyson deals with physical and psychological pain. Tyson donated £10,000 on the spot for DEBRA’s ‘A Life Free of Pain’ appeal during their interview. Myra loved her work with DEBRA and provided support where she could. Through this period, we’ve spoken to numerous people with EB that she was helping online and in-person - her impact was truly profound. Myra was extremely passionate about supporting the EB Community and as a family we would like to continue her legacy.

Her impact went far beyond these engagements. Myra has garnered a significant social media following over the past 6-7 years. True to form, Myra never hesitated to listen to anyone who reached out to her for support, career and personal advice. After her passing, numerous people reached out to us to let them know how she had supported them, especially during times of hardship. Alongside her passion for fighting EB, Myra was wildly ambitious; this led her to a career as an entertainment journalist. She interviewed the likes of Tom Holland, Jake Gyllenhaal, Zendaya, Samuel L. Jackson and Michael B. Jordan, to name a few - her interviews are listed on her YouTube channel. She featured as a writer in publications such as Forbes, Marie Claire, BBC and British GQ. Myra also focused her writing on advocating for women with disabilities, highlighting the issues faced by them and what can be done.

For those who knew Myra, she will be remembered for her kindness, confidence and unlimited positivity. Myra dealt with unimaginable pain all her life but never lost hope. Throughout the challenges she faced, she remained kind, beautiful and grateful. She was a believer in gratitude - the pain inflicted by EB and her other health conditions was never enough to dim the light and fight within her. As a family, we will miss her laughter, bravery and unique ability to lift the mood in any circumstance. She leaves an incredible legacy, one that we hope will provide inspiration for anyone facing the challenges of EB and life.