Virginia woman's back pain led to devastating diagnosis: 'I thought I was going to die'

LOUISA COUNTY, Va. -- Music has always served as a source of joy for Wanda Christmas.

The melodies the Louisa County native created moved her mind and spirit. But the music the singer and pianist once made was silenced after a pain in her back led to a devastating and painful diagnosis.

“All of that has slowed down [the music] from where it used to be since the diagnosis,” Christmas said.

After two years of testing, doctors confirmed in 2020 that Christmas had stiff-person syndrome (SPS).

The rare autoimmune neurological disorder impacts one to two people out of 1 million, according toJohns Hopkins Medicine.

Christmas said she asked doctors to test for it after researching the symptoms.

"I went to every specialist there was because of spasms and not being able to move,” she said. “They couldn’t figure out what was going on. No one had heard of stiff-person syndrome. No one knew to even look for stiff-person syndrome.”

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The disorder can cause painful muscle contractions and spasms that often begin in the legs and back, according to Johns Hopkins Medicine.

“You can see me and I look normal, but you can’t see the pain I’m in,” Christmas said. “At one point I thought I was going to die with the spasms. They were coming like every minute.”

Christmas said the diagnosis has changed her life. She is unable to work and do many things because of how painful it is to sit or stand for too long.

“I made it to the table and I sat down and I couldn't get the fork from the plate to my mouth because I was so stiff,” she said. “I am in so much pain that I have to lay down.”

Initially, Christmas was forced to use a walker and stair lift to navigate her two-story home.

“Once I start to move, the pain starts,” she said. “There were days where I spent the entire day crying.”

While there is no cure for SPS, Christmas said medicine has made the pain more manageable.

She is determined to live a life full of purpose and use her voice to bring awareness to the disorder.

“Maybe more people will look it up, maybe more people would understand, at least people will be aware,” Christmas said.

She is working to share her song of redemption to encourage others to find their motivation to do the same.

"Every morning, I wake up and open my eyes I say, ‘Thank you, Jesus for letting me see another day,’” Christmas said. “I’m so grateful. I’m grateful to be alive.”

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