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EB Awareness Week: Life with EB as a teen

14 year-old Fazeel Irfan has Dystrophic EB (DEB) and discusses his mission to find a cure.

“I can’t eat hard foods, like crisps, because that creates blisters in my mouth, and I find it difficult to eat a lot because that also causes blistering.”

Did you know 20% of the EB population in the UK live with Dystrophic EB (DEB)? And I am part of this statistic.

The worst thing about EB is the pain. The pain is incredible. I have to take so many painkillers every day – sometimes paracetamol and ibuprofen, sometimes the medication is so extreme it puts me to sleep. Then there’s the itch. Some days there is no itch at all and sometimes I have days where I just can’t stop itching. And there is normal stuff like eating. I can’t eat hard foods, like crisps, because that creates blisters in my mouth, and I find it difficult to eat a lot because that also causes blistering. The EB nurses are amazing. They know everything – without them, I probably wouldn’t know what to do with all the creams and dressings I have to put on every day to protect my skin.

I understand from my Dr this condition may be inherited by what’s called a recessive or dominant trait. The seriousness of my condition varies. I can lead what most people would think is a ‘normal life’ but 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.


Pictured: Fazeel and brother Nabeel

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. I can’t play roughly, like other people. Football and rugby are out of the question. Although I do go on the trampoline with my brother. I don’t do any tricks. 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 have big plans. I want everyone to understand what having EB really means. We all need to be better educated.

"EB to me is something in our every day life that we don't let change us as humans..." 

Nabeel is brother to 14 year old Fazeel and finds it hard to see his brother in pain and is as determined as Fazeel not to let EB change his family.

Together we can #FightEB.

To hear Fazeel and Nabeel describe what EB is to them, please watch the videos below.

How can you help?

Please share Fazeel's story to your community on social media to help us raise awareness of this devastating condition. 

Find out more about our awareness campaign.

At DEBRA, our work is focused on funding research for treatments and ultimately a cure, while also supporting people and their families living with EB to enhance their quality of life through improved healthcare, access to information and respite care.

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