'I have Stiff Person Syndrome like Celine Dion, it got so bad I had to quit work'
“Although I was scared and in pain, I laughed – I couldn’t believe my condition had such a ridiculous-sounding name.Basia had been in remission for leukaemia since 2011 when she was diagnosed with the disorderShe says 'The only people I told were my mum, Grazyna, now 86, and a few friends, who were brilliant'“The doctor explained that SPS is a rare neurological disorder that can cause stiffness and painful muscle spasms set off by touch, noise or emotional distress.
“I began intravenous immunoglobulin infusions, where beneficial antibodies are delivered through a vein, every fortnight. "They helped relieve some, but not all, of my symptoms. I was able to walk, but only with the aid of a cane, because I was often in pain and suffering spasms.“I was passionate about my career and did whatever I could to keep going, using a collapsible cane to make it less obvious there was anything wrong.
“Then, in July 2019, with the majority of my symptoms under control, another doctor said I could stop the infusions and continue with my low dose ofBasia's work at the Hope Animal Hospital, where she'd been volunteering part-time, kept her going“But within a few months I was having severe, violent spasms that lasted an hour at a time. I fell twice while working on set. Everyone was worried, but didn’t know what to say.
She reveals 'Though I’m devastated for Céline Dion, I hope that by helping raise the disease’s profile, it may get proper research'“Unable to reach my phone, I screamed for help and a neighbour came to my rescue.“After that, I decided to be more open, so I posted pictures my friend took – of me stuck in the bath and later recovering on the floor – on Instagram to show the reality of living with SPS.
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