A 35-year-old mother who was forced to sell her wedding ring to pay for her life-saving surgery said she would rather have a “solid brain than diamonds”.
The mother of one, Kate McGinley, has a rare and life-threatening disease that causes her joints to flex “like rubber”.
As a child, she could stretch her body like a contortionist and dislocate shoulders, hips and fingers on command, which she wiped off as a party trick.
But she did not know that her unusual talent was caused by a silent illness that quickly escalated after the first birth.
The Welsh mother was only diagnosed with Ehlers-Danlos Syndrome (EDS), a condition that affects the connective tissue that supports the skin, joints and bones, in 2017, she told Wales Online.
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Kate’s illness escalated after the birth of their son Alex, who is now six years old
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Now Kate is forced to raise £ 37,000 to pay for brain surgery to tackle the life-threatening condition as it is not covered by the NHS.
She explained that EDS is a rare connective tissue disease that affects her body’s collagen production.
“Usually, your collagen gives your cells structure like cement. Mine is like rubber and makes my ligaments, skin, joints, everything extremely flexible. This causes a variety of problems inside that your body can’t handle.
“I develop postural othostatic tachycardia (POTS), which leads to disabling headaches, temperature regulation problems, blindness when standing, extremely high heart rate and extreme fatigue.
“My joints are extremely painful because my body cannot support them due to their elasticity.”
Kate urgently needs brain surgery because of her progressive Ehlers-Danlos syndrome
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Because of the flexibility of her body, Kate now has an even more worrisome problem – her brain is being pulled through the base of her skull, crushing her brain stem.
“Your brain stem is so sensitive and controls so many body functions,” she said.
“Because of this compression, I experience numbness and weakness all over my body, bladder and bowel problems, severe headaches, balance problems, and memory problems.”
Kate said her symptoms got much worse after the birth of her son Alexander, who is now six years old.
“EDS never knew I had it until I had it. It was like a switch failed the moment I was born, ”she said.
“For him, all he has seen is a tired and aching mother. He is a very balanced and empathetic child. He is very helpful and he notices that I cannot run up and down the stairs 40 times a day.
An x-ray shows craniocervical instability, causing her neck to “crush itself”
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“I can only do one thing a day, be it Tesco or vacuuming. Otherwise I’m just lying in bed. He brings me things or he plays with things while sitting next to me in bed.
“He’s so understanding that it has become his daily lifestyle.”
Kate, who lives in the small village of Pontneddfechan, Powys, also has cranio-cervical instability that causes her neck to “self-crush”.
“Every time I turn my head it causes terrible pain, my arms don’t work, and I can’t hold my own head without support,” she added.
Kate added that her husband, Clark, 47, who works as an engineer, has also struggled in recent years.
“He feels like he’s lost his wife. It was all a heavy burden on his shoulders as he had to fill the gap in addition to being a key force, ”she said.
Her condition has left her struggling with pain
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EDS is estimated to affect one in 5,000 people and there are little to no treatment options.
“Ehlers Danlos is the least researched and least funded disease in medical history,” claimed Kate.
“There’s no NHS plan for that and no help available, so private health care is the only option due to a lack of research data.”
Kate said there are only four surgeons in the world who can fix their neck and brain – and one of them is based in the UK.
“He’s an EDS specialist who can stop 80% of my symptoms and give me my life back,” she said.
“It will fuse my skull with my neck and also decompress my brain to give it more room to relieve the pressure.
“He will also use my data to inform the national spine registry to produce research data that will eventually feed into NICE guidelines so that other EDS patients can receive this treatment at the NHS.”
Although she obtained private health insurance through her work, she claimed that she was denied coverage because her procedure was “experimental”.
“I was ready to go to the theater in my hospital gown and they withdrew the funding. And refused treatment for me. It was one of the most traumatic experiences of my life,” said Kate.
Kate claims her private health insurance won’t cover the operation
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Kate’s only option now is to find the funds she needs for the life-changing surgery. She is already in the process of selling her car and getting rid of her wedding ring too.
“I’d rather have a rigid brain than a few diamonds on my hands,” she admitted.
She launched a GoFundMe page two weeks ago in the hopes that the public will be generous enough to donate to her cause.
The amount was increased by actor Michael Sheen, who donated £ 1,000.
“I used to work for Women’s Aid in Port Talbot and he’s their ambassador now. One of my old colleagues suggested I contact him, ”she recalls.
“I literally just tweeted him, explained what I was going through and asked him to retweet me. I didn’t expect him to donate so much money, bless him. He’s a Welsh hero.”
Welsh actor Michael Sheen donated to Kate’s fundraiser
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Kate, who works for a private clinical trial company in Swansea, has been unable to work for the past 18 months because of her condition.
“I lead clinical trials and work to help patients like me get the data they need for new treatments,” she said.
“And I am able to professionally prevent: rare diseases that require new treatments that the NHS does not recognize.
“I just want to go back to work and continue my career in medicine.”
To donate to Kate’s fundraiser, please click here.
