Mark gives his illness a face
A GOOLE man with a genetic condition which he claims was misdiagnosed by doctors has launched an online group to help other sufferers.
Mark Rance, 27, of Jackson Street, suffers from Benign Joint Hypermobility Syndrome – a genetic and degenerative condition that affects the body's soft tissues.
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Mark Rance
Although there is no cure for the condition, Mr Rance believes he can help others by giving them vital information that can help improve their quality of life.
He has now launched a group called Loose Limbs on the social networking site Facebook to raise awareness of the condition and reach people across the world.
Members will be able to talk freely about the condition, contact each other and access links to other websites which can help.
He said: "After the Mail highlighted my story, it motivated me to try to carry on to raising awareness.
"Other people commented on the Mail's website who have the condition but are without a diagnosis.
"I think Facebook will be a good place for people to talk and learn more about the condition.
"I feel really strongly about helping other people, although there is no cure, you can limit the damage and delay the situation I have found myself in.
He claims doctors at several hospitals failed to spot the signs of the illness, incorrectly diagnosing several other things, preventing him from getting the life-changing physiotherapy sessions he needed for his condition.
By the time his condition was diagnosed, the damage to Mr Rance's body had already been done and he was unable to undergo physiotherapy which, if started early enough, could have delayed the effects of the condition.
10 Comments
by Claire Brewis, Liverpool
Saturday, September 06 2008, 10:24PM
“I was fortunate to be diagnosed by one of Professor Birds friends who happened to be at Alder Hey if it were not for him I would have received as much hassle as Mark! Although I must say he didnt really help alot but just knowing what i had allowed me to research alot more and find Professor Bird whom Dr Sills had not told me about knowing!”
by Cara Reay, Presteigne, Wales
Saturday, September 06 2008, 3:50PM
“Well done to Mark on raising awareness. Both myself and my partner have HMS and it really effects our lives as well. I am a member of the HMSA, I use their online forum everyday to gain info & support. My partner (31) has to use a walking stick to get around and is still awaiting treatment.”
by nonya, here
Tuesday, August 26 2008, 11:14AM
“The rheumatologist Professor Graham believes HMS could be as common as 1 in 5 and EDS 1 in 10. Hard to know the true statistics when people aren't getting diagnosed.
It took me over 20 years, by that time excessive damage was done to my body and I am now having to use a wheelchair.
It's great to see someone setting up a support group, good luck with it”
by bendy bod, here
Tuesday, August 26 2008, 10:53AM
“Professor Graham estimates that HMS is as common as 1 in 5. EDS is as common as 1 in 10. As we all know a lot of people out there who are not diagnosed so these stats could be wrong.
It took 20 years for my diagnosis. Apparently that is very normal.”
by Daniel, Beverley
Tuesday, August 19 2008, 6:28AM
“I have been told that i have a similar condition to this calles EDS (Ehlers Danlos Syndrome)
This i've been told affects 1 in 15,000 people. Although this is a rare condition and in my case it's not the worst type It can still be painfull at times.
I was not made aware of my condition untill I was 25 and i'm still waiting to have test done at 28.
I can understand how uncomfortable this is for mark as part of my condition is hypermobility and condition like this are coming out in the open. This condition from experience can sometimes be crippling.”
by peter, Withernsea
Monday, August 18 2008, 6:49PM
“well done Mark, less said about
the so called NHS.”
by Marie, Lincoln
Monday, August 18 2008, 4:49PM
“This is excellent. I love this story so much.”
by Marie, Lincoln
Monday, August 18 2008, 4:48PM
“Well done!”
by marie, Lincoln
Monday, August 18 2008, 4:35PM
“Well done”
by Marie, Lincoln
Monday, August 18 2008, 4:31PM
“Good on him”