Edinboro woman with stiff person syndrome now in remission, offers hope for Celine Dion

Kylie Allen-Kulyk has a message for Celine Dion: Don't give up hope.

Allen-Kulyk, like the famous singer, has been diagnosed with stiff person syndrome, a rare autoimmune disease that causes progressive muscle rigidity and spasms. After battling the debilitating symptoms for 13 years, the 23-year-old Edinboro woman is currently in remission.

Now she hopes Dion can also recover from the disease, which affects about 1 in every million people, according to the National Organization for Rare Diseases.

"If I had the chance, I'd tell her everything that I know, that it won't be easy but that she has to fight," Allen-Kulyk said. "I'd tell her to keep fighting because so many people care about her and are praying for her."

More: Céline Dion lost control over her muscles amid stiff-person syndrome, her sister says

Dion announced she had the disease in December 2022 when she had to cancel her 2023 world tour. In a recent interview, Dion's sister said the singer's symptoms have worsened and that she doesn't have control of her muscles.

Allen-Kulyk has been in Dion's situation. She first noticed flu-like symptoms when she was 10, followed by excessive vomiting and abdominal discomfort.

Doctors at first thought she might have a mental illness or that her family was seeking opioids, but Allen-Kulyk later developed head-to-toe muscle spasms, and her arms and legs would lock into bent positions.

After seeing specialists in Pittsburgh, Cleveland and Cincinnati, Allen-Kulyk was finally diagnosed with stiff person syndrome in 2018 at Johns Hopkins Hospital in Baltimore.

There is no cure for stiff person syndrome but its symptoms can be treated, according to the National Institutes of Health. The doctors at Johns Hopkins developed a plan for Allen-Kulyk that included plasma replacement therapy and low-dose chemotherapy.

"It took two years before I noticed a difference, and I didn't really start feeling good until about six, seven months ago," Allen-Kulyk said.

Allen-Kulyk still experiences difficult days, but nothing as severe as she did in 2019, when doctors placed her in an induced coma for several days to ease the stress on her body.

More: Albion woman with Stiff Person Syndrome finds relief through treatment, 'prayer warriors'

'I get to experience life'

She felt well enough in September to enroll in classes to become a certified phlebotomist and now works part time at Saint Vincent Hospital. Allen-Kulyk, an Elk Creek Township native, also lives on her own in Edinboro.

"I'm living the dream right now. I get to experience life," Allen-Kulyk said.

Allen-Kulyk was surprised Monday when a producer from "Inside Edition" contacted her, asking if she would do an interview about stiff person syndrome and Dion for the syndicated TV show.

She talked about her own battle with the disease and her support for the singer. The program aired Monday across the country.

"When a celebrity like Celine Dion speaks publicly about their health battle, it means so much to others fighting the same illness," Allen-Kulyk said after her "Inside Edition" interview. "You feel like you're not alone."

Contact David Bruce at dbruce@timesnews.com. Follow him on X, formerly known as Twitter, @ETNBruce.

This article originally appeared on Erie Times-News: Kylie Allen-Kulyk hopeful as Celine Dion battles stiff person syndrome