Kylie Allen-Kulyk, the Albion-area teen with a debilitating disease so rare that it impacts only one in a million people, grows more emboldened in her quest for a cure the more aggressive her condition becomes.
Allen-Kulyk, 18, has Stiff Person Syndrome, which causes horrendously painful and uncontrollable muscle spasms. She has been in and out of the hospital's intensive care unit in recent weeks receiving emergency treatment for the disease.
The hospital has become an all-too-familiar place for Allen-Kulyk. Symptoms of the disease began to manifest when she was only 10. It started with severe vomiting and evolved into spasms that twist and bend her arms and legs and contort her face. The Kulyks have seen doctors all over the tri-state area.
One misdiagnosis after another led to a lot of false hope. Symptoms would subside, only to return even stronger.
More unnerving for Allen-Kulyk and her family were the unfounded accusations of hospital-hopping and drug-seeking leveled against them. When specialists at Johns Hopkins Hospital in Baltimore, Maryland finally diagnosed Allen-Kulyk with Stiff Person Syndrome last March, that burden — the burden of having to convince ER doctors and nurses that what ailed her wasn't a figment of her imagination — was lifted.
But the disease itself remains.
When Allen-Kulyk agreed late last year to tell me about Stiff Person Syndrome, she appeared to be your average, healthy and happy-go-lucky 18-year-old kid. But within days she had to be life-flighted back to Johns Hopkins for emergency treatment. She recovered, only to find herself back in the hospital again before Christmas.
Doctors at Saint Vincent would eventually release her two days before the holiday. Allen-Kulyk and her family traveled home in style — in a limo provided by Rupp Limousine that was arranged by Jan Espin Stork of the Erie office of the Make A Wish Foundation of Greater Pennsylvania and West Virginia. Make A Wish also planned to send the family to the Bahamas for a long overdue break on Jan. 12, but the trip was postponed when, yet again, Allen-Kulyk had to be taken back to the ICU for unplanned treatment. She returned home Friday after 12 days in the hospital.
All of the setbacks have left the family with that familiar feeling of helplessness. But Jill Kulyk said her daughter has stayed positive as doctors have adjusted treatments.
She said that Kylie was upset at first that their trip to the Bahamas had to be postponed.
"Now she tells her sisters, 'We will get there when I am healthy and we will have a blast,'" she said.
Allen-Kulyk has made it clear that she wants to educate anyone and everyone about her disease and inspire others who find themselves facing adversity.
"I made a promise to myself with this journey I am on," she wrote recently to her followers on Facebook, "to help impact others with their struggles in the most positive way I can."
She hashtagged the post with the words "I will make a difference."
Anyone who's followed her story in recent months knows full well that she already has.
Erie Times-News staff writers share their views from behind the scenes, stories and bylines. Matthew Rink can be reached at 814-870-1884. Send email to firstname.lastname@example.org.
This article originally appeared on Erie Times-News: Stiff Person Syndrome: Kylie Allen-Kulyk inspires others as she battles rare illness