Article on woman with EDS : I’m facing paralysis at 29 but the NHS won’t operate

Sly Saint

Senior Member (Voting Rights)
I am 29 years old and have Ehlers-Danlos Syndrome, a rare but under-diagnosed condition that affects as many as 268,000 people in the UK – up to 90 per cent of them women. There is an operation that I could have to address my symptoms but it isn’t available on the NHS or anywhere in the UK.
I wouldn’t wish this on anybody – the pain I feel is exhausting, constant and often terrifying. Most people have never heard of EDS but it’s a genetic condition that affects the collagen in your body, making connective tissues like skin, ligaments and blood vessels very soft.

The connective tissues are so weak that my neck is no longer able to support my head. My skull presses on the brainstem at the top of my spine causing severe neurological symptoms. Brainstem compression like mine can lead to paralysis because it disrupts vital signals between the brain and the body – which terrifies me. Despite my disability, I was working until a few months ago. I was an administrator at the Royal Hospital for Neuro-disability, close to where I live with my dad and his partner – who I call my stepmum – in her flat in Putney. I loved being with the patients, being creative, coming up with activities that paralysed people could do, like tie-dyeing and birdwatching. I put a lot of love into that job. But my condition deteriorated and in the end I had to stop working.
I was diagnosed with EDS in my early 20s but looking back I’ve been unwell since my teens. At first my doctors put the pain down to anxiety, saying it was all in my head and that I was overemotional. It’s true, I was very stressed as my parents were getting a divorce; I had an eating disorder and was unhappy at school. But if you’re in excruciating pain, you’re obviously going to be crying and asking for help.

When I was 20, they finally said, “Oh, you’ve got fibromyalgia.” I began subscribing to the magazine of a charity, Fibromyalgia Action UK, which had an article about EDS and how some people with it were being misdiagnosed with fibromyalgia.
 
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From the article:
The connective tissues are so weak that my neck is no longer able to support my head. My skull presses on the brainstem at the top of my spine causing severe neurological symptoms. Brainstem compression like mine can lead to paralysis because it disrupts vital signals between the brain and the body – which terrifies me.
 
From her fundraiser linked at the bottom of the article:
MRI and CT imaging have confirmed I have Craniocervical Instability, and Atlantoaxial Rotary Displacement (in other words I have dislocated my neck), causing my spinal cord to be abnormally stretched and brain stem compressed, resulting in cervicomedullary syndrome.
The recommendation is a craniospinal fusion and stabilization from the Occiput (skull) to C2, a bilateral Occipital neurectomy and left C3 neurectomy. In the future further surgery might be necessary to fuse my spine from C2 down, but for now it has been recommended we avoid this.
22 July 2025by Holly McConnell, Organiser
Dear Friends and kind strangers!
My fundraiser has been updated with the latest medical reports and surgical information for those interested. It's been quite a journey these last few months with lots of changes!
I will be having my surgery in America now on July 29th. I've deteriorated quite a bit and can get an op sooner in the US with one of the best Ehlers Danlos Neurosurgeons in the world. There are only a small handful of such specialist surgeons.
 
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