Shirley’s syringomyelia story: “Just 0.008% of people have my rare condition – The Brain Charity stopped me from becoming a recluse”
Shirley, 63, was diagnosed with syringomyelia – a fluid-filled cyst that grows inside the spinal cord – in June 2021.
Only 0.008% of the world’s population have the extremely rare condition and neurologists believe Shirley’s cyst, which is located in her neck, was triggered by whiplash sustained in a car accident in 2004.
Over time, the cyst, known as a syrinx, can get bigger and grow upwards towards the brain – damaging the spinal cord and its nerves, and eventually brain cells.
Shirley, from Birkenhead, Wirral, had been laid off from her job as an operations manager during the COVID-19 pandemic, and said her diagnosis made her a ‘virtual recluse’.
Former debt advisor and forensic account Shirley said: “My job had always been about helping others, but when I needed help it was so hard for me to ask for it.
“Due to COVID-19, when I was diagnosed I felt like I was left out on a limb on my own.
“I had always been a positive person, but the diagnosis combined with losing my job made me feel like a victim, wondering ‘why me?’.
“I couldn’t pay my mortgage and bills, and became a virtual recluse. I stopped talking to people and stopped going out, using COVID-19 as an excuse.”
Shirley first began experiencing unexplained neurological symptoms and regular falls in 2010, but syringomyelia was not diagnosed then, despite her going to her GP.
She feels there should be better systems within the NHS to ensure patients do not fall between the cracks of different departments and the ‘bigger picture’ is assessed.
Shirley added: “If my syringomyelia had been picked up sooner, I would have understood my symptoms more, taken the falls more seriously and potentially not done certain things.
“I think within the NHS it’s no one’s fault, but it’s easy for things to slip between the cracks of different departments, so something can be diagnosed and not looked at again.
“Someone should be looking at the bigger picture, and making those links.
“This would be a safeguard for when doctors move on and things aren’t updated on systems.”
Shirley is now also learning to live with regular brain seizures, and is still undergoing tests to ascertain whether these are related to her syringomyelia or whether they could be caused by epilepsy she may have had since birth.
She was referred to The Brain Charity by her consultant at The Walton Centre in summer 2021, first working with our team to apply for the Personal Independence Payment (PIP) she was entitled to, to alleviate money worries.
Shirley said: “I got my new job through The Brain Charity’s employment team’s advice on what to look for.
“I didn’t even know The Brain Charity was there, but coming in and meeting the team was so helpful.
“It’s a fabulous institution and it needs to be applauded and recognised.
“Applying for PIP and getting a new job both had a big impact on my life practically, but it was the emotional support I appreciated the most.
“Having a regular check-in phone call in the diary to see how I was doing was so important – it sounds like a small thing, but it made a huge difference to my life at a time I was feeling isolated.”