Maya lives with recessive dystrophic epidermolysis bullosa (RDEB).

#FightEB to help Maya's dream of improving itch and pain management

I am Maya Spencer-Berkeley and I suffer from recessive dystrophic epidermolysis bullosa. 

I am a freelance model and an advocate for EB. I spend my time using my modelling and social media platform to spread awareness and educate people on EB. 

Every day I have to bathe and shower and change my dressings, which is very time consuming and draining. My parents are both nurses so I have been fortunate in that they are able to help me with my skin when needed. I am an only child and the first person in my family to be diagnosed with EB so I’ve always felt very isolated amongst friends and family.

One of the most frustrating things for me is the itching.

It’s like my whole body is on fire and I have ants crawling all over me. It’s so overwhelming and no one without EB can understand how bad the itch actually is. I think the lack of awareness has always been a big difficulty for me because I hate having to explain to every single person who sees my skin what EB is. It means I hide my skin as best as possible in most situations to avoid being questioned.

I decided to get involved in fundraising for DEBRA because I want to prevent future EB sufferers from dealing with the same struggles as I have.

I’m particularly interested in EB research. This is important to me because I think the quality of life for EB sufferers could be greatly improved if there was more help for itch and pain management. Donating to DEBRA can help to achieve this.