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Wendy

Wendy

Wendy was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB), which affects every aspect of her life; although the condition wasn’t diagnosed until she was 25.

Wendy is now retired but she wouldn’t be able to do anything without the support of her husband Peter and her assistance dog, Teddy (from Canine Partners), who has changed both of their lives. “Teddy helps me get up and out each day. He undresses me, finds my clothes, helps to pick things up and loads and unloads the washing machine, which provides valuable respite for Peter who has to do everything else – Peter prepares and purées my food and helps me cope with everyday living. They do a brilliant job between them, as EB affects everything I do, but particularly my throat, eyes and my mobility as my hands are closing where the skin has fused together from the constant damage,” says Wendy.  

“Swallowing is the most terrifying thing about my EB. I have steroids for when my throat is at its worse. I don't cope well when it closes, which can happen at any time and stop me breathing. It’s really scary. If this happens Teddy will raise the alarm to wake my husband. As a consequence I don't sleep well and wake often, needing to sip honey for my throat. Peter is constantly passing me drinks as I have ointment in my eyes at night to prevent them blistering, so I can't see the cup. It’s really frustrating! 

“As my condition has worsened I’ve found myself unable to open doors, use the cash machine or even handle money, so Teddy does all these things for me.

“I found I was treated differently at college because I was disabled, but Teddy has given me back my independence and the confidence to join art and French classes. I keep in touch with other people who have EB through Facebook and have met other DEBRA members. I think the DEBRA Weekend Away is so important. I love going. It changed the way I felt about my EB. I saw the bravest people on earth there and realised I needed to get stronger mentally. Some of them were coping with EB at its very worst.” 

Wendy hasn’t let EB stop her enjoying life. “I take Teddy out every day. I love giving talks and demonstrations with him. We bird watch and are keen gardeners. I paint and write poetry. I'm writing a book about how Teddy has changed our lives. I even used to own and ride horses.

“DEBRA has been brilliant helping us fund a hoist to help me turn over in bed and a washer/drier to cope with all the extra washing. We couldn't have coped without their help. They are always there when we really need them. It's such a relief to know we are not alone. 

“My advice to anyone else with EB is to push your boundaries and don't listen to other people telling you, you can't do things. The worse that can happen is you fail, but everyone fails sometimes. You learn to adapt how you do things – I rode horses even though I was told not to, as it gave me blisters, but had the time of my life.”

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