Meet Kylie Allen-Kulyk, one in a million, with Stiff Person Syndrome

Local News

A local girl is spending her childhood coping with pain most of us can’t fathom.  It’s a mysterious illness and it took nearly a decade to pinpoint a diagnosis.

Kylie Allen-Kulyk has a devastating disease… The pain so intense her body trembles.

“I didn’t know someone could be in that much pain.”

Kylie’s Mom, Jill, tells us, “You can’t even grasp it until you are physically there”.

Muscles cramping from head to toe, her arms and legs twisting, her face contorting.

“My tongue won’t let me move.”

Stiff Person Syndrome flare-ups make this teenage girl nearly unrecognizable. 

“The way my body distorts; it’s unbelievable.”

Jill says, “…I can’t even recognize my own child sometimes”.

It’s unrelenting, excruciating pain, complete torture, one repeat for this teen.  And, everyone around her, witnessing the horrific reality of this rare, neuromuscular autoimmune disorder.

Jill tells us, “It’s pure heartache”

Kylie’s been battling this disorder since she was eight years old, spending her childhood trying to figure out what is making her so sick.

“There are days I bawl, I cry, I question things, I get mad, I get frustrated…”

Kylie is fighting to survive on a path of unknowns, with a disease so rare; the odds are one in a million.  And, there are far more questions than answers.

Jill says, “she amazes me every day because this is not easy”.  She describes it as chasing a ghost.  “Helpless. You feel helpless… you want to take it away; you would in a heartbeat”.

Over the years, her symptoms have gone from bad to worse; her body attacking itself.

Dr. Amrita Chakraborty of St. Vincent says, “It can be anxiety-provoking as well as physiologically just painful”.

Kylie tells us, “Having attacks that last 6 hours, 3 hours; I’m exhausted”.

Her mom tells us, “I’m in constant amazement. She’s a fighter. A little fiesty… haha…  No teen should spend this much time in the hospital and obviously, for a mother, this is a nightmare but somehow despite it all, Kylie finds a way to inspire everyone around her”.

If you’re in the room when the worst symptoms flare up, you may find yourself helping to hold her down so her bones don’t break and ligaments don’t tear.  That’s how Hospital Security Guard Ahmed Altaher met Kylie, and it’s safe to say she made a big impression on him.

“To realize how long she’s gone through this and how brave she is really puts you in a state of wonderment.”

Her determination; inspiring.

Jill says, “…she gives me that strength; it pours off her. And, I think she gives everyone else around her strength that’s there with her because it blows your mind”.

Kylie and her closest supporters not just surviving but making the most of every moment, whether gutting through the unthinkable pain or breathing an often all-too-short-lived sigh of relief.

“You never know how strong you are until you don’t have a choice.”

The rare diagnosis years in the making means Kylie has a team of doctors in Erie and across the country, working to manage her symptoms and move research forward and give this young lady her life back. 

Take a look at an extended web-only extra with Kylie below:

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