Living with a rare disease known as "Stiff Person Syndrome"

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ANCHORAGE (KTUU) - Governor Walker proclaimed February 28th as "Rare Disease and Disorder Day." And some rare diseases are life-threatening mysteries with no known cure.

Holly Ward receives treatment for Stiff Person Syndrome at Kenai Medi Center.

Autoimmune diseases like "Stiff Person Syndrome" are rarely heard of, but hold heavy impacts to those who have it.

Last year, Holly Ward, a mother of four, exchanged vows. But a week later, she experienced uncontrollable shaking and muscle spasms.

"I left work and went to the emergency room, because my arm was in a lot of pain, and I was experiencing some stiffness in my back," said Ward. "I couldn't figure out what was going on."

Holly's leg also began shaking.

As it turns out, Ward's symptoms were caused by SPS - a rare disease that strikes one in one-million people.

Ward's primary doctor, Dr. R. Lynn Carlson of Kenai's Medi Center, said the condition is not contagious.

"There's no way you would catch this disease from her," Dr. Carlson said.

Dr. Carlson said the disease could be related to a gene mutation that causes Ward to be more susceptible to environmental exposures.

Ward said since her symptoms started, it's difficult to perform everyday tasks.

"There's days I can walk and look just like an everyday normal person, and there's days where I can't even get up - can't take care of myself," Ward said.

Work is now not possible with the life-altering condition.

"It's definitely a change in my family life. I had lost my job, because of it, 'cause I couldn't walk," Ward said.

With four kids at home, Ward said some roles have reversed.

"My children are so sweet. They'll help me get my crutches or they'll [ask], 'Hey mom, what do you need? Can I get this for you?'" Ward said. "I'm able to sit and do the girls' hair, or read stories, or play with them. But when I do have flares, it's so hard, 'cause I'm not able to go out and play with them."

Some of Ward's favorite activities, like CrossFit, are out of the question for now.

"Working out and being able to do that was a big passion of mine before, and now I get to sit down and cheer on my fellow CrossFitters," Ward said.

Now Ward spends many hours at the Medi Center. There, she receives treatment known as "intravenous immunoglobulin" through an IV.

"It calms down the immune system, so that you're not attacking yourself so much," Dr. Carlson said. "We can do pretty much the same thing, only it takes longer if we eat anti-inflammatory foods. Avoiding starches and sweets - we're avoiding all the chemicals we can avoid."

As Ward hopes her disease will go into remission one day, for now she's doing what work she can do to help others understand rare diseases.



 
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