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The Sussex Ehlers-Danlos and Hypermobility voluntary community support group SEDS

We are SEDS based in Crawley, Horsham and Mid Sussex areas. EDS/HSD means our connective tissue which is throughout all our body is defective. There are also associated conditions linked to EDS/HSD such as allergies, dizziness, fibromyalgia, arthritis, muscle rigidity, M.E/CFS, autism, gut motility, vascular issues, organ issues and more.
Lots of people are hypermobile with no problems, 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.
For more info see facebook page  https://www.facebook.com/SEDSHSD/   or email admin@infosussexeds.org.uk  We are always looking for new Trustees, volunteers, EDS not necessary!
Why SEDS has potentially saved my life!  Karen Scott:
“I had never heard of EDS until 2015. I was working 3 days a week, spending 4 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 M.E. 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 6 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.
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. In January this year I was told I need urgent surgery. Without it my neurological symptoms would 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 had to crowdfund for around £100k for surgery. At 51, the risks are greater post menopause and had only 4 months to that point. I worried if anyone wanted to help a 51 year old, but I have a husband, children and a granddaughter who need me. We have now been on BBC Sussex Radio, East Grinstead Meridian Radio, BBC South East plus most major print titles.
 
I am at £98k now. I guess the main thing is to thank everyone who has helped me get to be able to have the operation in Spain and to make it known that the operation is on the 2nd May….
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 everyone who has donated so far.”
If you would like to donate to the crowdfunding page, please visit: https://www.gofundme.com/help-karen-scott-get-treatment

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