DEBRA Patron HRH The Countess of Wessex has today volunteered at the newly opened DEBRA store in Martins Heron, Bracknell, Berkshire to support the individuals and families living with the devastating skin condition epidermolysis bullosa (EB). The Countess volunteered alongside DEBRA volunteers and staff, and had a busy morning sorting donations, pricing stock and helping to serve customers.

During the visit, Her Royal Highness also spoke to DEBRA Ambassador, Fazeel Irfan, who has dystrophic EB (DEB) about what life is really like living with EB, and his experience of managing the condition during lockdown.

DEBRA is the national charity with head quarters located in Bracknell Berkshire supporting people suffering from epidermolysis bullosa (EB), a potentially fatal genetic skin condition that causes constant pain due to unstoppable internal and external blistering. There is currently no cure for EB.

Chantelle Milne, Director of Retail at DEBRA comments:

I am delighted to welcome our Patron HRH The Countess of Wessex to our newly opened DEBRA store. We have over 1000 volunteers who play such a crucial role alongside our staff in helping our charity on a daily basis and we are hoping to recruit a further 300 volunteers in the next quarter. Like many other organisations, the last few months have been a challenging period for DEBRA but we are confident our customers and donors will continue to support us as we raise vital funding for the incredible EB community.

Fazeel Irfan, DEBRA ambassador comments:

I am so excited to meet HRH The Countess Wessex. 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.

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.