I'm facing paralysis at 29 but the NHS won't operate

Telegraph

2 days ago

My left side is numb and almost impossible to move and my hands feel so weak I can't even hold a phone. I have nerve pain all over my body that feels like it's being constantly rubbed with nettles or having acid thrown on me.
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.
When the pain gets really bad, especially in my face and my head, my left eye hurts so much that I almost want to tear it out. It affects my vision too.
Coping with the pain
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.
Now I spend time alone listening to audiobooks – sitting up to read causes too much strain – occasionally seeing a friend and resting. What scares me most is the thought that my life will be just this pain and even paralysis. When it's excruciating, I have dark thoughts but wouldn't act on them because I have family and loved ones, and don't want to hurt them.
The diagnosis
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.
As a child my life was pretty normal but I was always hypermobile as a kid, which is common in people with EDS. My left leg would bend inwards but I wasn't in any pain.
People with EDS often suffer from dislocated joints and though my joints would partially dislocate, it never really bothered me until I was 16, when I started getting pain in my spine. With EDS, you often become more symptomatic as a teenager and in your early 20s. 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. There was a list of symptoms and an explanation of the Beighton score – an assessment tool used to measure joint hypermobility, or excessive flexibility – and I thought, 'Oh God, that's me!'.
I contacted the doctor who wrote the piece, and he advised me to get a referral to an NHS rheumatologist, who confirmed that I did indeed have Ehlers-Danlos. I was then referred to University College London Hospital for pain management and physiotherapy splints, which I wore on my wrists and ankle. My neck pain wasn't so bad then, but I've had to use a neck brace to support my head since the nerve pain started increasing when I was 25.
Living with the condition
I studied international relations at the University of Sussex, but had to come back to London and study from home with the Open University. It took me six years to graduate. By then I had reconnected with a friend from school and we became a couple. We rented a flat and he looked after me full-time, getting a carer's allowance, because I had to use a wheelchair, and needed help to wash and get dressed. He was amazing and put up with a lot during our seven years together, but it just got to the point where I was too unwell to be in a relationship.
Now I live with dad and my stepmum and they have been amazing.
Hope for an operation
The operation to address it isn't available on the NHS, or anywhere in the UK, for people with EDS because of debate about its effectiveness, even though specialists in Europe and the US are convinced it's very likely to help. My hope is to see one of these specialists in America. My Dad has sold his house at 75, raising £70,000, and my aunt has given me £10,000 of her savings. It's only with their help that I can even think about going to the States for the operation. The surgery will fuse the vertebrae in my neck so it supports my head better, which will ease the pressure on my brainstem, to relieve the nerve pain and stop my other symptoms, including seizures. The surgeon I'm hoping will operate has a 90 per cent success rate.
We're still well short of the £150,000 I need for the surgery and travel but I refuse to let this condition ruin me and have set up a GoFundMe page so that I can pay for it.
Why the NHS won't operate
To be honest, I feel gaslit by the NHS. I was given an MRI lying down, which didn't measure the full stress on my neck. After I paid for a private upright MRI, specialists in the US and in Europe said its results confirm my condition. But the NHS disregards this, even though it did perform this operation on EDS sufferers until about 2017, and a study was being done into its benefits, but all that stopped before the pandemic. Now, no British doctor will give me a diagnosis, even though one referred me to the US surgeon who will now hopefully operate.
I'm hoping I can eventually go back to my job, even if it's part-time, and be free of the terror of being paralysed.
Despite all I've been through I haven't given up on life – or love. I recently met someone online, who seems to genuinely like me – being unwell filters out insincere people – and we've had a few picnic dates where I've been able to lie down and talk to him. I'll never be a mother because I don't want to pass on the EDS, which there's a 50 per cent chance of, but he has kids so, who knows, maybe one day I can be a stepmum to them? I won't have the life most women my age dream about, but I have hope that I can live a good and happy one if I get this surgery, avoid paralysis and am no longer in this horrendous pain.