Struggling to cope with a mystery illness which left her unable to leave her own house, Carmen was finally diagnosed with a condition so rare many medical professionals are not aware of it. Here, she shares her story.
For years, Carmen used to love travel, exploring the world on her own. Egypt and Barbados were favourite countries to visit.
But one day in 2011, the 39-year-old found herself unable to walk out of the front door of her home in Liverpool, after experiencing increasing difficulties while outdoors.
“I would get to a crossing on the road and suddenly I was unable to go,” she recalls.
“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.”
Carmen received treatment 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 a six month peroid, 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), a rare neurological 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.
“Obviously at first all I wanted to know is if there was anything we could do about it,” says Carmen.
“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 lockdown, Carmen had accessed The Brain Charity’s counselling soon after her diagnosis and found social support through its coffee mornings.
But when COVID-19 hit, she was faced with the problem of being unable to get food delivered online. Her family who lived close by on Merseyside 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.
Again, she found support form The Brain Charity, with the team arranging for Carmen to access food deliveries.
“It was a relief knowing someone was going to be coming with some food,” says Carmen.
“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.”
To learn more about the work of The Brain Charity, visit www.thebraincharity.org.uk
