Raising awareness: Local woman battles rare disease

Photo provided by staff.

POSTED: Friday, February 28, 2014 - 5:36pm

UPDATED: Monday, March 17, 2014 - 11:56am

Stiff Person Syndrome, that's when your body stiffens without warning and you can't move for hours. Only about 300 people have been diagnosed with it in the U.S.including one local woman.

Joy Adams has four kids. So, she stays pretty busy. But now, she's only as busy as her body will allow her to be. It all started two years ago.

"When I would exercise, I would start having tremors in my legs," Joy said.

So of course Joy wanted to know what was going on. There were a lot of doctors and a lot of guesses.

"Stress induced seizures and intracranial hypertension," Joy said.

A year of not knowing, until one day, it was painfully clear.

"My hands stiffened. My legs stiffened. My toes were straight out," Joy said.

It kept happening.

"I was in a little bit of stress, and I went into a spasm," Joy said. "My whole body was just tremoring. I was having a hard time breathing, and then my next attack was two weeks later."

It's Stiff Person Syndrome. It's drastically changed joy's life.

"I can't do those things that I really wanted to go do," Joy said. "So I have to send me little girl on a field trip by herself, and those kind of things are really heartbreaking."

There's been a big learning curve and not just for Joy.

"You don't know what to do," Jonathan Adams said. "You don't know what you and do to make it better."

It's not easy.

"You say a spasm, but if you can imagine, the worst Charlie Horse you ever had in your leg all over your entire body from your fingertips to your toes at one time," Jonathan said.

But Joy never knows when it's going to happen and it can last for hours. This is where faith comes in.

"I don't think about the next spasm. I don't dread the next spasm because I leave that in God's hands," Joy said.

Now, she wants to raise awareness about this rare disease. Even though it's hard, it brought her family closer. It made her family stronger.

"We've learned to love each other more. We've learned compassion for one another, but each day is a challenge," Joy said.

If you want to learn more about Stiff Person Syndrome: http://www.ninds.nih.gov/disorders/stiffperson/stiffperson.htm

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