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Niantic woman talks about her experience with Stiff-Person Syndrome

<i>WFSB</i><br/>Susan Mackie has had Stiff-Person Syndrome for almost 15 years.
Susan Mackie has had Stiff-Person Syndrome for almost 15 years.

By Dylan Fearon

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    NIANTIC, Connecticut (WFSB) — We’re learning more about what it’s like living with Stiff-Person Syndrome.

Singer Celine Dion announced she was diagnosed with that rare disorder, and that’s raising awareness about the condition.

A woman from Niantic spoke with us exclusively about her battle.

Susan Mackie has had Stiff-Person Syndrome for almost 15 years.

It’s affected her walking and her posture.

For years she had spasms that are painful and uncontrollable until she finally found the proper treatment.

“I was really almost dead. I could hardly walk. I could hardly do anything,” said Susan.

Fourteen years ago, Susan started feeling excruciating pain in her stomach and back muscles.

They started stiffening up.

She didn’t know what was happening.

“You curl up in a ball. I was crying so bad,” Susan said. “Nobody would understand what it was.”

Random spasms and frequent pain continued for five years, until Susan was diagnosed with Stiff-Person Syndrome, an extremely rare disorder.

There are fewer than 5,000 diagnosed cases in the U.S.

People with SPS have a greater sensitivity to noise and touch, which can set off muscle spasms.

“I had stomach spasms all over and I was flailing like my arms would flail and my legs would flail,” said Susan.

It’s also affected her walking. Susan needs a cane.

Her posture has also declined.

SPS affects twice as many women as men, according to the National Institute of Neurological Disorders and Stroke.

“I’ve been dealing with problems with my health for a long time,” said Susan.

Most people had never heard of Stiff Person Syndrome until popular singer Celine Dion revealed she’s living with the uncomfortable disorder.

“Sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I’m used to,” Celine said.

Awareness and funding for research is key.

The head of the Stiff Person Syndrome Research Foundation said Friday: “In a single day, Celine Dion woke the world up about this devastating rare disease… We believe Celine has the ability to do for SPS what Michael J Fox is doing for Parkinson’s.”

“In Connecticut there are people ridden in bed, wheelchairs,” said Susan.

There isn’t a cure for Stiff Person Syndrome, but there are treatments.

IV treatment is effective.

Doctors also recommend muscle relaxers.

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