British celebrities increase awareness of Ehlers-Danlos Syndrome

Jun 24, 2013

CheryleeBritish celebrities who have Ehlers-Danlos Syndrome –  it’s time to be open about it!

Celebrity, Cherylee  Houston and I have Ehlers-Danlos Syndrome. Never heard of it? Neither had  I !!

“Now” is a British online magazine: Now Says

by Saffron Powell, Senior Designer

 

 
  • Corrie’s Cherylee  Houston made TV history bringing her real life illness Ehlers-Danlos Syndrome –  into the soap
  • Cherylee Houston’s  character Izzy Armstrong is currently taking the lead in the  soap
  • Myleene Klass’s arms are  super bendy
  • Another bendy celeb –  Russell Kane
  • Cherylee Houston on This  Morning last week talking about her condition

 “This blog post has been a long time  coming and is as personal as it gets. It was inspired by this open letter about Ehlers-Danlos  Syndrome I came across on the web. Until  recently I was in denial about the situation that I am in, and how my life  suffers because of it.For those of you that watch Coronation Street, I have the same condition as  wheelchair-bound Izzy Armstrong played by Cherylee HoustonEhlers-Danlos Syndrome – hypermobility type. There  are several types of EDS, from mild to life-threatening.
Cherylee
‘s character currently has  a main storyline in the soap where Michelle Keegan‘s character Tina became a surrogate for her child.

Cherylee made a TV breakthrough when she  took the part where her real life condition would be her character’s also. I had  hoped this would raise awareness of the illness but so far I’ve only met one  person that’s heard of it.

Celebs such as Myleene  Klass and Russell  Kane are hypermobile too, Myleene recently ‘showed off’ her bendy arms on ITV’s Celebrity Juice.  Watch the video here of her remarkable flexability.

And judging by how Russell has spoken on BBC2’s Something for the Weekend about  needing his foot arches for walking, perhaps he ought to get checked out.   Unfortunately there is only a handful of specialists in the country so  that process can take some time.

I sufferered from aged 11 until just a few years ago, when a pain doctor  finally spotted the EDS signs. Before that no one had a clue  and I was fobbed off by countless doctors.  I recall being baffled as to why I couldn’t point my toes as a child in dance classes, they would only bunch up. Or why I would collapse without warning when my knees gave way running the relay at the school sports day.

Basically EDS affects the amount of collagen in the body and  means I have loose joints and fragile body tissue. A bang to the leg causes big  bruises that last for ages.  And much to my husband’s frustration, I am  always wobbling on my ankles as I walk.

Stretchy skin, IBS and flat feet are another symptom, so walking or standing  up for a long time is painful. The worst problem for me is that my neck takes  the brunt of it, which subsequently means I have a constant headache.  Joints popping out of place cause havoc with my muscles, resulting in  constant pain varying from bearable to I-just-want-to-rip-my-muscles-out.

My day starts and ends with popping painkillers, sadly sleep is my only  refuge, expensive physio and accupuncture are the only things that I can do to  manage it.

Even my family and friends aren’t fully aware of what I have. One of the  problems with EDS is that it’s invisible – apart from the  miserable face, bruises and stench of Deep Heat coming off me.

I have never asked for sympathy, I barely discuss just how much this just  gets me down. All I am striving for is understanding and tolerance that I cannot  do what others take for granted.

There is no cure, and I am likely to deteriorate as I get older which is  frightening.
I’m just glad that someone such as  Corrie‘s Cherylee Houston will perhaps educate  people on this rare and frustrating illness and encourage people to look for the  signs of Ehlers-Danlos Syndrome.  And for people like me  to stop being ashamed of it.”

 

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One Response to “British celebrities increase awareness of Ehlers-Danlos Syndrome”

  1. I think it is great that EDS is being seen more by the public eye.

    I too have EDS and have been really struggling with it. I have to use walking aids at all times and need a wheelchair/mobility scooter when I go out.

    It shocked me how little is known about the condition and I took it upon myself to start raising awareness.
    So far I have been in my local newspaper and done a live interview on London Live TV.

    I am launching my own charity which is currently in the process of registration and will be up and running in March.

    I have set lots of goals for 2015 and will be running lots of events and doing as much as I can to raise awareness for the condition.

    I hope that more people can become aware of this and since I have started I have had so many people contacting me and are so happy that they have found someone else who has EDS!

    Hopefully all together we can raise as much awareness as possible.

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