An NHS healthcare assistant has revealed how doctors labelled her illness as a “mystery” after she battled stroke-like symptoms – but learned the truth after five years.
As Gemma Devine’s legs suddenly buckled beneath her, she was terrified.
Then came the onset of unexplainable stroke-like symptoms, including struggling to walk, high fevers, and her eyes no longer ‘working’.
But, despite repeated doctor and hospital visits, the 29-year-old’s issues remained a mystery.
It slowly ate away at the healthcare assistant’s life; missing out on her late teens and early 20s and feeling stuck while everybody else around her moved forward.
Until she was seen by one doctor who diagnosed her with a condition that affects one in every 400 people in the UK.
“I was so ashamed,” Gemma, from Lancashire, told Need To Know.
“I hid my illness and pretended everything was fine.
“But at my lowest ebb, I was too scared to even leave the house.
“Deep down, I knew that I couldn’t live like this forever.
“My life was on hold.”
Gemma’s battle began aged 18.
At the time, she had plans to go to university and train to become a journalist.
But then, she had the aforementioned collapse, where she fell to the pavement.
No matter how hard she tried, she couldn’t get up.
She said: “My body refused to move.
“I called my dad in a panic; I was so scared and just sobbed.
“I knew something was really wrong – but nobody could figure it out.”
What was thought to be a “one-off” then became a regular fight; with Gemma often experiencing numbness on the left side of her body.
As the paralysis wore off after a period of time, and with tests coming back non-conclusive, she was repeatedly sent home by doctors.
She soon gave up her dream of going to university, but kept pushing for answers.
Gemma said: “I didn’t have the strength to lift my arms high enough to brush my teeth or hair.
“I had to have seven teeth removed and clumps of my locks cut out due to matting.
“It was the most dehumanising and humiliating moment of my life.
“At age 18, I felt like my life had ended.
“And I wasn’t being taken seriously – maybe it was because I was young.”
Then, in January 2021, she was diagnosed with multiple sclerosis.
The condition affects the nerves in the central nervous system – and, currently, there’s no cure.
Gemma said: “Having answers at last was overwhelming; but a relief, too.
“I did worry, though, after how awful it was portrayed on television.
“And I was afraid to have the ‘disabled’ label. I didn’t like that.
“I began taking medication and the difference it made was incredible.
“I finally felt normal.”
Now, she’s had the support of the King’s Trust, which helped her to get her job as a healthcare assistant for the NHS.
They also helped her learn how to walk again.
She rarely has relapses due to her treatment with Ocrevus – an antibody therapy which destroys specific white blood cells that accidentally attack nerve cells – and has also found a new sense of purpose as a speaker for multiple sclerosis.
Gemma added: “I remember being on job seekers’ allowance when I was unfit to work.
“It was so embarrassing as people my age were working and starting their lives while I was stuck.
“I told the Job Centre I wanted to be a speaker – and to be doing that now; I’m over the moon.
“Being 29 and still living with my dad is frustrating; but it’s no fault of my own.
“The years I could have spent saving up, I was sick.
“I have no savings, so I’m starting over now.
“I know what it feels like to be scared and unsure.
“What the last few years have taught me is to be patient and kind to myself.
“I’m also a stronger, more compassionate and determined person because of what I’ve been through.
“After hiding away, I’m proud to say that I’m finally living my life again.”
