You are here: News > DEBRA Member Myra Ali Shakes Her Beauty to #FightEB

DEBRA Member Myra Ali Shakes Her Beauty to #FightEB

 DEBRA Member Myra Ali Shakes Her Beauty to #FightEB

Myra chose to share her story to show that people with EB – a potentially fatal skin condition which causes constant pain and lifelong disability – are not defined by it.

She says, "You never want people to see you as a victim. You never want people to feel sorry for you because you are suffering. You have to empower people to feel inspired by you."

Myra works as a translator for the Birmingham Women’s and Children’s Hospital NHS Trust, which is a Centre of Excellence in EB, part funded by DEBRA.

She says: “I speak Urdu and Punjabi and I help pregnant women from that region who can’t speak English, I help them in their appointments and through their pregnancy.

“It’s really nice having a job where I am helping someone and my condition doesn’t matter – the patient needs me and they require my help.”

Myra has to fit a time-consuming daily routine of painkillers and dressing changes around her job, and still finds time to be a body positive speaker and glamorous Instagram personality. Recently, she spoke at our Great Chefs Dinner, where she shared her personal experience of the life changing impact of the specialist EB healthcare service, which is part funded by DEBRA.

You can give now to #FightEB and help support the service and fund vital research into effective treatments and a cure for EB.

Myra says, "You never want people to see you as a victim. You never want people to feel sorry for you because you are suffering. You have to empower people to feel inspired by you."

Numerous people have got in touch with her via her Instagram account, where she shares fashion and make-up tips. She is also the first known person in the world with EB to have  cosmetic surgery – a collagen filler to straighten her nose.

Myra is a Media Ambassador for DEBRA. If you’d like to tell your story and fight EB in the media, register your interest here. You can check out Myra’s Instagram account @myraaliedit.

If you have EB and are thinking of having any kind of surgical or cosmetic procedure, always contact your specialist EB Team for expert support and advice in the first instance.

Make a difference

Make a difference

Please help us fund vital healthcare such as specialist EB nurses as well as research, care and life-changing support. 

Donate Today