“I woke up in tears because I was in so much pain…I was in absolute agony, my mum was terrified.”
Leanne Yewer was 16 when a crisp got stuck in her throat while she was at school, scratching her and causing a big blister on her throat. “I thought it was just a normal incident until I got home about one hour later and I realised the pain is excruciating and I can’t even describe it…It is like having a wound and putting salt on in” she said. She still has that blister today.
When she was born, Leanne was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare disease that makes her body covered with painful blisters, as her right foot had a blister that then became dead skin. Childrens who are born with this disease are also known as “Butterfly Children”, as their skin is fragile as a butterfly’s. Since that episode, she has never eaten crisps again and she is terrified of eating anything slightly sharp that could make her blister hurt and even choke.
Leanne feels lucky as her skin looks pretty good from the outside, a part from the blisters that cover her foot. While she was at high school she kept her disease hiden by wearing socks all the time, only few best friends knew about her condition. She said: “I tried not to let it take over my life. I didn’t let it stop me doing things, I carried on”.
Leanne is now 27 years old and during the last years, the condition of her throat and chest worsened: “When my blisters are at their worst, even my saliva hurts, I wouldn’t be able to breath and I wouldn’t be able to eat properly for weeks”. She is afraid of eating and she cannot cook, but her long term boyfriend taught her how to make pancakes, and now she cannot stop eating them.
“Pancake Day for me is every day”.
“Everyone is eating pancakes today and maybe I won’t just to be the opposite of everyone else!” she said. They are really soft and easy to swallow but also full of proteins so they can help Leanne gain the energy that she needs. But if she could pick a day to celebrate, it would be “Chocolate Fudge Cake Day”.
The latest couple of years had been very hard for Leanne, since she went under some operations to larger her throat. “I felt at my lowest after one of my operations, while I was under hydrocortisone to get rid of the pain and I had a really bad reaction to it, I got really angry and I was screaming in my partner’s face telling him to leave me alone”. But Leanne said that Debra, a charity that provides support to EB patientes, helped her a lot meeting people that suffer like she does.
Leanne ambition is to get back to work in order to get the money to travel the world. “Everyone is working full time and using their money to travel abroad and I couldn’t do that. I tried to find a job that would not be affected by EB but it did not work out. Me and my partner have been together for 6 years and we have never been on holiday” she said. Not having a job really frustrates her and she tries to do little jobs at home as much as possible:
“If I just sit around and watch TV I would go insane”.
“My ultimate goal is getting back to work so although I am suffering for EB now, I’d rather do it now and in the future I’ll be able to live my life like a normal person”.
Listen below to Leanne explaining her difficulties in everyday life.