Ex-Aston Villa player has rare Stiff Person Syndrome with impossible-sounding bone-breaking symptom
A woman living her dream as a professional footballer suffered a devastating injury which led to her being diagnosed with the same one-in-a-million disease as Celine Dion.
Ellen Martin was playing for Aston Villa Women on a normal Sunday in November 2021 when she was on the receiving end of a life-changing tackle.
"My left leg planted, twisted and I tore my ACL,” the 29-year-old, from Surrey, tells LADbible.
"I remember thinking, 'I've got nine to 12 months of the worst recovery coming,' because an ACL is every athlete's biggest fear. I truly thought that was the end of my world. Then life really decided to humble me."
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Even with a successful surgery, Ellen's recovery took a terrifying turn.
"I told my physiotherapist, 'I feel burning throughout my body. All my nerves in my body just burnt. My back's on fire, my legs are on fire, my arms are on fire.' It felt like someone had picked me up and put me on a bonfire," Ellen described.
Diagnosed with the same disease as Celine Dion
After months of worsening symptoms and countless appointments, she was diagnosed with Stiff Person Syndrome (SPS), an extremely rare neurological autoimmune disease that also affects the ‘My Heart Will Go On’ singer.
Dion publicly revealed her SPS diagnosis in December 2022, and she showed the candid reality of living with it in her 2024 documentary, I Am: Celine Dion.
"The doctor looked at me and said, 'You're not hearing me. This is a one-in-a-million disease globally. In the UK alone, there's about 30 of you, if that, and most of them will be above the age of 50. Not only are you rare, but to get it at your age is just unheard of'," Ellen explained.
According to John Hopkins Medicine, SPS is 'a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time'.
"Although there is no treatment that cures stiff person syndrome, working with a specialist and maintaining symptom control can make it easier to live with the condition," the health enterprise added.
"They told me, 'If you're lucky, you'll still be walking in a couple of years. If you're not, you'll be bed-bound within a couple of years," Ellen said.
"You've really got to hope it doesn't affect your breathing muscles because if your diaphragm won't inflate, then your lungs can't breathe'."
'It's like being tortured by your own body'
Ellen now lives with full-body muscle rigidity and violent spasms that can be triggered by sudden noises or movement. If the spasms are severe, they are powerful enough to break her bones.
"I've got full-body muscle rigidity. It makes you feel like you're locked-in, like you're becoming a statue made out of stone. The disease causes violent muscle spasms that can happen at any time. It basically feels like your bones are crushing," she said.
"I can literally see my limbs contorting on me. I'm thinking, 'If that ankle twists anymore, that's going to go,' and there's nothing you can do to stop it.
"It's 24/7, unrelenting, it never switches off. It's like being tortured by your own body."
Ellen's GoFundMe plea
Having lost much of her independence, Ellen has moved back in with her mother and now relies on her for everyday care.
She is now fundraising via GoFundMe to travel to the United States, where a specialist neurologist has offered to assess her and develop a treatment plan.
"I'm now on a journey to hopefully have some hope. A neurologist in the United States is willing to see me and offer their advice and, hopefully, a treatment plan and an assessment.
"They believe the human body has an incredible ability to heal and, with my young age on my side, there's a chance that I can gain a quality of life. I'm praying. I just need the help of the world to get me there."
‘Celine Dion speaking up about it is massive’
"People kind of knew about it from her documentary and they saw her have the spasms. That's some aspect of it. It's 24/7, unrelenting, it never switches off," Ellen added.
"I'm not a millionaire like Celine Dion, so I don't know what treatment she's had because she's about to do some concerts, so she's clearly done okay for herself. I do truly wish her all the best."
Ellen admitted that she’d never heard of the disorder before Dion ‘came out and spoke about it’.
"Celine Dion speaking up about it is massive. I hope she continues to use her platform to spread visibility for such a rare condition," she said.
‘It makes you realise you have one life’
While it remains a painful struggle on a daily basis, Ellen believes that she’s ‘changed as a person in a good way’.
"Before this happened to me, my friends would describe me as very confident... Now it's changed me in a way that I look at the world differently," she said.
"I am so grateful for the small things in my life that I considered small at the time. You suddenly realise that being able to sit out in the fresh air is everything... to enjoy loved ones' company, to enjoy friendships. That is the meaning of life.
"If my body switched on me tomorrow and all these symptoms went away, I'd travel the world. I've been in a box for years. It makes you realise you have one life. I'd want to see everything I can, share that with loved ones and friends, and just talk about how amazing it is to live and be pain-free.
"If someone handed me a football and said, 'You can go out in the garden and do some keepy-uppies,' that would be bringing me back to my old self."
Anyone wishing to support Ellen's fundraiser can donate via her GoFundMe here: https://www.gofundme.com/f/footballers-battle-against-rare-brain-disease
Anish Vij