‘I was born with an agonising ‘butterfly skin’ condition but I won’t let it stop me fulfilling my dreams’

Myra Ali was born with 'butterfly skin' (epidermolysis bullosa) - a life-threatening skin condition that causes her body to blister and tear. Now an entertainment journalist, charity ambassador and motivational speaker, Myra reveals how the rare disorder has shaped her life

Thirty-two years ago, my parents Naveed Saeed and Naila Ali were excited to welcome their second child into the world. All they wanted was for me, their daughter, to be born healthy. Instead, I emerged with no skin on my foot. Thankfully, I was also born in a Midlands hospital that specialised in my condition and I was quickly diagnosed with a burns-like skin disorder called epidermolysis bullosa (EB), which affects about 5,000 people in the UK. More specifically, I have recessive dystrophic – the most severe type of EB, which means that my condition will never improve, and I have second degree-burn-like wounds on my body that will never heal. Later in life, it can also lead to skin cancer.

During my childhood, my parents had to juggle looking after a large family (I have two brothers and two sisters) with the daily demands of my condition: expertly fixing my bandages, lancing my blisters, and learning how to hold me without injuring my skin. Bandages and bathing were a painful routine. Mum added potassium permanganate, which looks like purple crystals, to my bath in order to clean my wounds and, despite the discomfort, I was always excited to see the water change colour. To me, these crystals were medical versions of a Lush bath bomb and they allowed me to forget the pain I was in.

Myra as a young child

At school, my friends were very protective of me and they accepted me even though the bandages I wore made me look different. But they never knew the real extent of my condition, or the constant pain I was living with. And when I started secondary school, things changed dramatically; I no longer had a close group of friends like I did before. Perhaps teenagers are just less accepting of someone who looks different, but, ultimately, I blame myself. When you have a condition like mine, you have to make an active effort to seek out new friendships. I didn’t realise this until later in life. Now, of course, I welcome the chance to educate people about EB and I love it when a stranger strikes up a conversation with me because they’re curious about my skin.

I’m also grateful to my parents for always encouraging me to make my own decisions. I became more independent when my mum stopped wrapping my bandages for me and a nurse came to the house to help me every day instead. This was my choice: I wanted to take control of my care. I started going to hospital appointments myself and became more vocal about the procedures that were being offered to me. You could say I was headstrong, but really I was just scared of having general anaesthetic and I avoided operations until I was 21 – when I finally developed a close, trusting relationship with my plastic surgeon surgeon Demetrius Evriviades, who has done a number of surgeries on me – I really wouldn’t be able to get through operations without him.

I realise now how lucky I am to live in the UK and have access to the medical care I’ve received. Many fellow EB sufferers I speak to in other parts of the world simply don’t have the same level of care because they don’t have specialists available in their country. For a long time, I remember that food would get stuck in my throat due to internal scarring in my oesophagus. I would be in a fancy restaurant but have to run to the bathroom to cough up food because it was making me choke. Then I’d return to the table as if nothing had happened. Last year though, doctors reduced the scarring in and the effect has been truly life changing. Suddenly I was able to enjoy food again, and I insisted on going to my favourite Iranian restaurant to eat that first meal!

epidermolysis bullosa

However, coming from a Pakistani background, there are still pressures I feel just because I’m a woman. In my culture, for example, a big emphasis is placed on marriage and I became increasingly preoccupied with finding the right guy for a while. Similar to Orthodox Jews, we use matchmakers but this was never going to be a viable route for me because of my condition – sadly, the perception of people who have disabilities is still very narrow-minded. I equated marriage to happiness, and at one point I became very depressed, negative, and resentful of my EB. Now though, I am glad to say I’m happy. I’m still very open to meeting a guy, but it is not my main focus. I believe that when the time is right, the guy I am meant to be with will come into my life.

Right now, I’m too busy with my work to worry about dating anyway. Becoming a journalist has given me a sense of purpose, but it wasn’t what I initially set out to do. In fact, I studied history at the University of Birmingham, where I graduated in 2014. I loved university and made friends easily there. I became a keynote speaker for various charities and schools, and regularly gave speeches for the Debra UK charity. In 2011, I even gave a speech on the behalf of the Countess of Wessex, who is the Royal patron of the charity. I’ve also spoken for Changing Faces and the Katie Piper Foundation, and I went on to work in the NHS as a translator straight after uni. I was a good listener and patients would open up to me about their lives. They would tell me their stories, but I never dreamed these skills would eventually lead to a future career in journalism.

My first gig as a journalist came in April, 2019, after I asked Debra UK if I could interview one of their charity heads. They agreed and I was given a great opportunity to chat with celebrity chef Jason Atherton at an event. While I was researching him for the interview, I realised how much I loved the process: I knew every detail, right down to what his favourite Filipino food was by the end. That night, I also met actor Tom Holland’s mum, Nikki, who very kindly offered me the opportunity to interview Tom for his next movie – and I jumped at the chance! At the time, I thought I would only be interviewing Tom but I ended up interviewing the entire Spider-Mancast, including Samuel L. Jackson, Zendaya and Jake Gyllenhaal.

Myra with Tom Holland

After that, I did a string of red-carpet interviews for the London Film Festival in October, 2019, which was a wonderful experience. For all the disadvantages my skin brings, it has also given me the advantage of standing out, which is useful when you are one of many journalists wanting the attention of a publicist to secure an interview with the lead actor. It’s what helped to secure my interview with Timothée Chalamet, who wasn’t due to pass through my press area at an event. However, when his publicist saw me and noticed that I looked different, she approached me with a chance to interview him separately. I was thrilled to be the only journalist in my area to secure that chat.

I now work part-time for Debra UK as a media ambassador, and have gone on to meet everyone from Lily Rose Depp to Joel Edgerton. One of my favourite interviews to date was with Fred Berger, the Golden Globe-winning producer of La La Land. He was an absolute joy to talk to, and it made me realise how much passion I have for journalism and the buzz I get when an actor says, ‘That’s a great question’. It gives me a surge of energy even when I’m in pain.

People often ask how I type up my features afterwards, given my fingers have been fused together by scar tissue. But, the truth is, I can still type and text really fast! Yes, my dexterity has been severely affected and I have to make sure that I take paracetamol four times a day to manage the pain, but EB doesn’t affect my ability to work.

I spent a large part of my life fearing the future, but being a freelance journalist and moving to London has brought focus and a sense of happiness to my life; it’s helped me to discover an ambition I didn’t even know I had. And my journey has taught me that when a woman focuses on her goals, any obstacle can be overcome with determination and positivity. That’s what true female empowerment looks like to me.

To learn more about Epidermolysis Bullosa, visit Debra.org.uk

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