BASIA Zamorska, 64, lives in New York, USA and suffers from a rare progressive neurological disorder called Stiff-person disorder.

Basia has been emboldened by the knowledge that, despite her suffering, some of Hollywood’s brightest stars also struggle with the disorder – such as Celine Dion.

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“Standing in the shower, my legs began to shake.

“I put it down to the stress of my hectic lifestyle and got ready to catch a taxi for a dress-fitting appointment.

“But every bump in the road caused my whole body to spasm and I had to hold on tight to the seat to try to stop it – then I was overcome with nausea and vomited.

“It was May 2015, and my life as a stylist in New York, having moved from my home of Nottingham in the UK, was a whirlwind of celebrity clients, fashion shoots and partying.

“I loved every second, styling actresses and supermodels, including Penélope Cruz and Christie Brinkley, and working with icons such as Susan Sarandon and Meryl Streep, though my years spent styling Mariah Carey were the craziest. 

“Despite having been in remission for leukaemia since 2011 and having a busy lifestyle, I was strong and healthy.

“But after the shower incident, I started experiencing other symptoms.

“Gradually, I found it harder to walk and keep my balance.

“My right leg began to curve in, and my toes and feet went stiff.

“I began to lean forward too, and my gait was uneven, resulting in me having to hold on to walls and furniture to get around.

“I was 56 and terrified that I had no idea what was happening to me. 

“The following month I saw a doctor, who dismissed my concerns, telling me it was anxiety.

“But I knew something else was going on.

“Desperate with worry, I made an appointment with a neurologist in March 2016.

“They did a blood test and, 30 minutes later, diagnosed me with stiff person syndrome (SPS), a condition that singer Céline Dion recently revealed she has.

“Although I was scared and in pain, I laughed – I couldn’t believe my condition had such a ridiculous-sounding name.

“But it’s incredibly serious.

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“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.

“It’s progressive and, as it impacts your reflexes, can lead to falls and serious injuries.

“There is no cure, only treatments for the symptoms. I struggled to take it all in.

“I began intravenous immunoglobulin (IVIG) 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.

“The only people I told were my mum, Grazyna, now 86, and a few friends, who were brilliant.

“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 of diazepam.

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“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.

“I was a liability, and so I had to quit styling, which left me devastated.

“But my work at the Hope Animal Hospital, where I’d been volunteering part-time, caring for abandoned cats, kept me going.

“Through trial and error, I’ve found the right balance of treatments.

“I take daily medication and have IVIG infusions every fortnight.

“I also have Botox injections in my shins every three months to help the nerves in my legs and feet.

“But I can’t go out alone, unless I’m having a really good day and then I can cope using my cane.

“I’m lucky that I have an amazing helper twice a week. Recently, I had a violent spasm in the bath.

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“Unable to reach my phone, I screamed for help and a neighbour came to my rescue.

“Along with a friend of mine he’d called, they got me out of the bath. 

“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.

“I received so many supportive comments. 

“Though I’m devastated for Céline Dion, I hope that by helping raise the disease’s profile, it may get proper research.

“I’ll keep facing this vile condition with an unwavering sense of humour and a refusal to let my outfit standards slip – I was a stylist for 30 years after all. Sequins make everything better!”