Catherine seeks help to raise the profile of her invisible illness
Date published: 20 May 2013
Catherine Eves, at the age of 20, she was diagnosed with Ehlers Danlos Syndrome (EDS), a form of hypermobility, which has left her in a wheelchair
Catherine Eves is on a local mission to raise awareness of what she describes as her “invisible illness.” At the age of 20, Catherine was diagnosed with Ehlers Danlos Syndrome (EDS), a form of hypermobility, which has left her in a wheelchair.
Hypermobility Syndrome’s are multi-systemic and can be complex to diagnose and manage. EDS is a connective tissue disorder, and is caused by a defective gene involved in the production of collagen, the ‘glue’ that holds your body together. Due to this, Catherine’s joint will often dislocate or partially dislocate leaving Catherine in pain. Catherine also suffers from postural orthostatic tachycardia syndrome, crohns disease and many other health conditions.
After being a member of the Rochdale Hypermobilty Syndrome Association (HMSA) support group, Catherine is now a group leader and wants to raise as much awareness of the condition as possible. Catherine said: “I want to give back to the local community after the local support I have had. It is nice for people to know that there is a support network of people who understand.”
Catherine wants to raise awareness of EDS and other hypermobility syndromes in the hope a cure can be found. “A cure won’t help me now but if a child is diagnosed at age 5 or 6 we could help them live a more fulfilled life” added Catherine.
Catherine knows that EDS can be a life-limiting condition and wants people to understand her disability.
Catherine added: “If people are willing to recognise and talk about hypermobility then it’s a start. There will be people living with EDS who don’t know about it. If you are double jointed but suffer from underlying pain then you may have a form of hypermobility.”
Currently, Catherine is aware of 12 people in the Rochdale area who suffer from hypermobility syndrome and wants them to know that there are local meetings going on for support and friendly conversations.
Coronation Street actress Cherylee Houston, who plays Izzy Armstrong on the long running soap, also suffers from EDS and even though people aren’t aware of this, Catherine believes it does help the cause. “People can relate more if a celebrity has the condition” said Catherine.
Catherine and the HMSA have a long journey ahead of them but Catherine is set on raising awareness of her condition. She said “This won’t happen overnight. It will take years to be nationally recognised. I want to help people who are undiagnosed, get people diagnosed earlier and fundraise as much as possible.”
For any information on EDS or hypermobility syndrome or you feel you need to speak to someone for support then contact Catherine at Rochdale@hypermobility.org or visit hypermobility.org
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