Celine Dion diagnosis shines a light on Stiff Person Syndrome

Liz Blows, who has lived with SPS for more than 30 years, said she hoped it would raise awareness

Celine Dion has been praised by a charity founder for sharing her Stiff Person Syndrome (SPS) diagnosis.

The French Canadian singer told her 5.2m Instagram followers about the condition, which makes her muscles spasm uncontrollably, in December.

It was the first time many people had heard of the rare, incurable neurological disorder.

Liz Blows, from Beverley, who has lived with SPS for more than 30 years, said she hoped it would raise awareness.

Celine Dion revealed her diagnosis in December, telling her 5.2m Instagram followers the condition makes her muscles spasm uncontrollably

In an emotional video post on Instagram, Dion said: "Recently I've been diagnosed with a very rare neurological disorder called Stiff Person Syndrome which affects something like one-in-a-million people."

It has led to difficulties walking and singing, she said, meaning "it hurts me to tell you that I won't be ready to restart my tour in Europe in February".

Mrs Blows, who runs a support group and charity, said: "This is so sad for Celine, but there is a strong positive - having such a high profile sufferer must help raise awareness of this horrible condition.

"I know with Celine it has affected her throat, and despite her fame and her money I just hope she has the best team around her," she said.

She said: "When I was first diagnosed I had never heard of it, despite having been a nurse.

"But I think it was relief - because I had spent so long making excuses to people about why I couldn't walk properly and do things in a normal manner."

Talking about her work, she added: "Because it's so rare and there is little or no direct medical research the charity's main function is to offer support for sufferers.

"I think she [Dion] should join a support group because absolutely no-one should be alone with this."

Mrs Blows said it was unlikely a cure would be found in her lifetime, but added it was vital to raise awareness of the rare condition among both medical professionals and the general public.

What is Stiff Person Syndrome and is there a cure?

SPS is a very rare condition and not well understood.

According to the National Institute for Neurological Disorders, it is characterised by "fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms."

"Abnormal postures, often hunched over and stiffened, are characteristic of the disorder," they also note.

"People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.

"Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe."

While there is no cure for SPS, there are treatments - including anti-anxiety medicines and muscle relaxants - that can slow down its progression.