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Fazeel’s story
Fazeel Irfan has recessive dystrophic epidermolysis bullosa (RDEB) and discusses his mission to find a cure for EB.
“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 25% of the EB population in the UK live with recessive dystrophic EB (RDEB)? 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.
Donating to DEBRA really will help a cure happen.
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.
DEBRA also helps me now.
DEBRA’s Members’ Day is awesome – I’ve been to two so far.
It’s a special day for people with EB to meet each other and spend time together. There is so much fun stuff to do.
DEBRA is an amazing charity. Your donations will count.
If you donate to DEBRA, you’ll make life easier for people suffering from EB and you’ll help to find a cure. I’ll be happy, you’ll be happy.
Together, I know we can do this!”
