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

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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