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Celine Dion diagnosis helps people with rare disorder

Getty Images Celine DionGetty Images
Neil Morgan, who has Stiff Person Syndrome, says he can now namedrop Celine Dion when asked about the condition

Celine Dion's decision to speak about her struggle with a rare neurological disorder has helped others affected, believes one man living with it.

Neil Morgan from Swansea said "it's a long story" explaining what Stiff Person Syndrome (SPS) is.

Now he said he can just name drop Dion instead when people ask him.

The 56-year-old music megastar from Canada revealed in 2022 that she has SPS, which causes muscle stiffness and painful spasms.

Amazon MGM Studios Celine Dion holding her arms above her head and looking upAmazon MGM Studios
Celine Dion shares how she is managing Stiff Person Syndrome in a new documentary

Her biggest selling songs include the 1993 hit The Power of Love and My Heart Will Go On, released in 1997 for the film Titanic.

While exact numbers of people with SPS are unknown, some studies suggest it could affect as few people as one in one million of a general population.

"Twenty odd years ago I had a pain in the groin. I thought I had a hernia or something," Mr Morgan, a former fabricating welder, told BBC Radio Wales.

"It just gradually go worse and worse.

"I went to the doctor and I had every test you could conceivably think of and it took them eight years to diagnose Stiff Person Syndrome."

He said of the five different types of SPS, he gets the "classic" symptoms including muscles in spasm and a spine that is curved and beginning to fuse.

"They tried every medication they could think of," he said.

"Nothing worked for me. There is no cure.

Neil Morgan sitting in his living room
Neil Morgan says he is struggle to get around and had to retire early from a welding job

"Every year I notice it gets worse."

He had to retire early from his job and give up his hobby, angling.

"It was a difficult time for me because I had a mortgage and it was very worrying financially," he said.

"It took a while to get benefits in place and be able to pay all the bills."

"I'm struggling with mobility," he added.

"I can manage around the house with some sticks.

"I can go short distances with crutches but I'm relying more on a wheelchair now."

Mr Morgan said he participates in a Facebook group offering support and raising awareness, but says having a celebrity with SPS has made a difference.

"When Celine Dion got diagnosed with it, I wouldn't wish it on my worst enemy, but it did raise awareness," he said.