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Rare Disease Centre will improve patient care

Rare Disease Centre will improve patient care

DEBRA member Christo has Recessive Dystrophic EB. He talks about the difference the new Rare Disease Centre at St Thomas’ Hospital will make to him:

"I know the Rare Disease Centre will be there for me in my hour of need. EB affects my daily life a lot. Skin infections, open wounds and severe pain are all everyday problems. When I get a skin infection I have to go into hospital to get it treated with special antibiotics. For the last two years I’ve also been dealing with skin cancer connected with my EB.

"EB has affected my life so much that I’ve had to give up my Master’s degree at university. I have days when I can’t get out of bed because of the pain. I have to spend a lot of time at the hospital because there are so many different specialists to see, and mum comes with me. I go to an EB clinic once a month, sometimes more often, and these visits alone generally involve two to three hours’ waiting time. Every six months I need to go for a more detailed check-up – when this happens I can easily spend up to eight hours at the hospital.

"The new specialist Rare Disease Centre at St Thomas’ Hospital will make a huge difference to my life, and my mum’s too. The current dermatology day centre is a crowded place. Mum says it’s like a prison – dark and gloomy. The new Centre will provide a space especially for people with rare conditions like me – everyone there will know about EB without my having to explain it. It’s really reassuring to know there’s a dedicated place for us to go.

"Even the fact that there will be a waiting area will be a great help – we can chat to each other and make new friends instead of sitting by ourselves in rows in the corridor. I’m very pleased the Centre will have comfy chairs too. When you spend a lot of time sitting around waiting, it’s really important the chairs are soft as this helps reduce pressure and keep blistering to a minimum.

"I’m really happy this project is happening – from being a dream, it’s becoming a reality."

Find out more about DEBRA's role in funding the Rare Disease Centre at St Thomas' Hospital.

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