Jane Green of Sussex EDS and HSD Support explains: “EDS/HSD means our connective tissue which is throughout all our body is defective.
“Lots of people are hypermobile but it is when it impacts on health and education/work detrimentally that we need to prevent further deterioration.
“In some cases it is life limiting as you can see, sadly, from the account below.”
Karen Scott’s story:
“In November, I shared my story of how I became ill in 1990, ME diagnosis in 2003 and finally an cEDS diagnosis in 2018. Now I want to share the story of how SEDS has played a vital role both at that time and currently.
“I had never heard of EDS until 2015. I was working in Crawley three days a week, spending four in bed in order to do so and using crutches. At a wedding the groom’s mother told me she had EDS and that some symptoms were similar to ME. Later after watching DIY SOS and Antonia Payne-Cheney, a teenager with EDS, I decided to attend a meeting held by Jane Green who was setting up a local community group which became known as SEDS.
“It not only changed my life, but has the potential to save it. I had always been highly flexible as a child. A teacher commented on it when I was six and how I seemed to get more tired than my peers.
“I had knock-knees and a friend commented on my pointy feet as a teen. I had no idea anything was wrong.
“My knee dislocated when I was 17 for the first time. By my thirties I had ruptured a tendon in the other leg (as had my mother at about the same age) and had a mild stroke.
“In my forties my symptom list was huge and growing by the day and every day I never knew what I would wake up to. It is very scary to have symptoms and not be believed.
“Attending the meeting with Jane made me feel as if I’d been slapped. All those apparently disconnected issues had a name!
“Jane encouraged me to seek a diagnosis and it was confirmed. I had hEDS. By May, we were on BBC TV and we had SEDS truly under way a month later.
“My heart and gut issues were now being managed properly; I was receiving weekly physiotherapy and I thought that was the end of the story. It wasn’t.”
‘This month I was told I need urgent surgery.’
“Through SEDS I learned about Cranial Cervical Instability and Atlantoaxial Instability. An upright scan showed I had both.
“With no neurosurgeon in the UK available to operate on someone with EDS due to its complexity, the results were sent to hospital Teknon in Barcelona. This month I was told I need urgent surgery.
“Without it my neurological symptoms will not only continue but worsen. My neck ligaments are too soft and can’t support my head.
“I’m at risk of internal decapitation and death at worse. Best is impingement to spinal cord leading to paralysis of my limbs.
“I now have to crowdfund around £100k for surgery. At 51, the risks are greater post-menopause and I only have four months to that point.
“I worry if anyone will want to help a 51 year old, but I have a husband, children and a granddaughter who need me. Had SEDS not taught me about CCI/AAI, my life would have been in danger without me knowing it.
“I would like to publicly thank them and also the Crawley Observer for allowing me to share my story.”
A crowdfunding page will be available soon if you’re able to help Karen. In the meantime, you can contact Jane Green via firstname.lastname@example.org if you are able to make a contribution or fundraise on her behalf.
For more information about Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder, visit the support group’s Facebook page at: Link