Carmen’s Stiff Person Syndrome story: “I used to travel, but my one in a million condition left me unable to leave my home”
Carmen used to travel the world by herself, exploring countries like Egypt and Barbados.
But one day in 2011, the 39-year-old found herself unable to walk out the front door of her home in Liverpool.
Carmen said: “I would get to a crossing on the road and suddenly I was unable to go.
“In my head I would be thinking, ‘why I can’t just cross the road?’
“My whole body had gone stiff, and I felt like I was stuck to the pavement.”
For a while, Carmen was treated for severe anxiety as there were no conditions doctors could diagnose from looking at her blood test results.
But after struggling with intense body spasms over six months, Carmen returned to her old GP who referred her to The Walton Centre, Liverpool’s specialist neurological hospital.
Here, she was finally diagnosed with Stiff Person Syndrome (SPS). SPS is a rare condition which is believed to affect just one to two in one million people.
It is still not clear what causes SPS, but the illness is typified by muscle rigidity and bodily spasms which can be brought on through sudden noise or light, like a beeping pedestrian crossing.
Carmen said: “Obviously at first all I wanted to know is if there was anything we could do about it.
“Despite it being such a tough thing to deal with, I was so relieved to get diagnosed as I knew I wasn’t just anxious.
“I was glad that I finally had proof I wasn’t making it up.
“I felt like saying ‘I told you so’ to the psychiatrists.
“Some people still don’t believe me, because the condition doesn’t have some exotic name.”
Before the lockdowns, Carmen had accessed The Brain Charity’s counselling soon after her diagnosis and had also enjoyed attending our coffee mornings.
But when Covid-19 hit, she was faced with a massive problem – she couldn’t get online to order food as the delivery slots were always fully booked.
Her family who lived close by had been ill and were self-isolating, and the rest of her family were in other parts of the country.
Carmen contacted several organisations but was unable to find the help she needed because those services were already overrun.
Finally, she got in contact with The Brain Charity and found we were able to help straight away.
Carmen said: “It was a relief knowing someone was going to be coming with some food.
“For about four weeks I was getting food delivered weekly until I could get access to the online shop again.
“It felt like a really personal service – it was fantastic.
“They didn’t just leave it outside as it would have been a struggle to get the wheelchair out and then the shopping back into my house.
“They wore masks and gloves too. I can’t praise them highly enough.”