EDS Awareness media alert

Can you name a disease that can affect 95 per cent of the body?

Hard to say, even harder to live with: Ehlers-Danlos Syndrome awareness month

Can you name a disease that can affect 95 per cent of the body? Ehlers Danlos Syndrome (EDS) is a very rare disease that does just this. People living with this condition that attacks the skin and organs, suffer from severe pain every day. Some young people have to take painkillers to simply get out of bed in the morning and have to take frequent hospital trips, making normal daily life extremely challenging. 

Children’s charity Dreams Come True, which fulfils the dreams of children and young people with serious and life limiting conditions, works with young people living with rare diseases such as EDS. Since 1991, they have only met 12 children with this condition – out of 5,420 records. One of these fulfilled dreams was 22 year old Lauren, who sings to cope with the pain of her condition and lift her spirits, who was given the opportunity to meet her idol Katherine Jenkins. 

Another of those young people with EDS is 22 year old Lucy Watts MBE who is now and ambassador for the charity and vocal advocate for improvements to palliative care and raising awareness of her own rare disease to help support others who are going through similar experiences. She has been left wheelchair bound since she was 14. Her dream to meet Paul O’Grady fulfilled at 21 was a very special moment for her and has created cherished memories for a lifetime. 

“My quality of life is restricted, hooked up to intravenous drips almost 24 hours a day and I am mostly bed bound, however I have a specialist wheelchair to enable me to spend as much time out of bed as I can, which most days isn't a lot but some days can be all day such as for an event in London.”  

“At 22 I have achieved a lot, however I have hobbies, interests, hopes, dreams and goals just like any other young person my age - I just have enormous obstacles to overcome to partake in my hobbies and to realise my dreams. I do not let my conditions or disability hold me back; they limit my ability to do many things and lead a 'normal' life, however I work with what I can do and push the boundaries where possible. It's not often I am defeated, as I am realistic about what I can do and do that to the best of my ability.”

Rare diseases are not well know which means they are often forgotten about, but Dreams Come True is aiming to raise as much awareness as possible of EDS and fulfil the dreams of those with the condition. 

To donate to Dreams Come True,  visit:http://dreamscometrue.uk.com

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Author: Hannah Attenburrow

Date: 12/05/2016

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