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A year without a hug

Donate a hug

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As we look to the future and the roadmap out of lockdown many of us are looking forward to being able to hug our loved ones again. A year without hugs has been hard for us all and has a huge impact on our emotional and physical well-being.

Can you imagine if being hugged hurt? Not being able to cuddle your loved ones as you fear ripping their skin at the slightest touch and causing extreme pain. That is the reality for many people living with EB, like Fazeel:

"The worst thing about EB is the pain. The pain is incredible. I have to take so many painkillers every day, sometimes the medication is so extreme it puts me to sleep. Then there’s the itch. Sometimes I have days where I just can’t stop itching. And there is normal stuff like eating. I can’t eat hard foods, because that creates blisters in my mouth. I find it difficult to eat a lot because that also causes blistering. My skin scarring, the fusion of my fingers and the depletion of my skin tissue all increase as I get older which will make life even trickier for me.

Some people living with Recessive DEB (RDEB) have a high chance of developing a squamous cell carcinoma (a form of aggressive skin cancer) before the age of 35. There are so many illnesses associated with this disease. Life is never easy. When you have EB, a lot of things are restricted. You have to think about every single thing you do. Other children don’t have to do that. That’s why I want to find a cure for EB if DEBRA hasn’t found one by the time I’m old enough to be a doctor. I want everyone to understand what having EB really means."

EB, Epidermolysis Bullosa, can be devastating to live with. We want to ensure that no family has to go through the impact of EB alone and that people like Fazeel have hope for the future through treatments that can make the symptoms manageable and research that will one day bring a cure. We aim for a life where hugs no longer hurt for people with EB.

A donation today is a hug to the 5,000 people living with EB in the UK and hope for the future. Your donation will enable us to fund vital research to improve treatments and find a cure. Please send a hug today and we hope you can hug those you love very soon.

Together we #FightEB, together we will beat EB.

Donate a hug

£