After Spending Almost Half Her Life In Hospital, She Got Good News In Time For Christmas

Erie News

For 8 years, Kylie Allen-Kulyk has been in and out of hospitals. For much of her 18 years she's also been in pain, wracked by intense muscle spasms that make her body uncontrollable.

For seven years she went misdiagnosed.

Doctors were at a loss to explain why she suffered so horribly, but this past year they found their answer. Kyle has Stiff Person Syndrome, an autoimmune disease that causes extraordinarily painful spasms. They can be powerful enough to even fracture bones.

Erie News

Stiff Person Syndrome has no cure and so much is still unknown about the disease.

This month Kylie was hospitalized and her family feared that she would have to spend yet another Christmas in a hospital bed.

Thankfully, just in time for Christmas, Kylie's been released. She will get spend the Christmas season with her family.

Kylie has teamed up with John's Hopkins to study the disease. She's a unique case because she's so young. Most people with Stiff Person Syndrome are between 30 and 60.

She spends much of her time shuttling between St. Vincent's Hospital and John's Hopkins. She's had her blood specially filtered twice, an attempt to remove harmful antibodies which are attacking her muscles.

The Make-A-Wish Foundation has Kylie on their radar. If she's cleared for travel she'll be spending time at Atlantis in the Bahamas. An unbelievably luxurious hotel on the picturesque island.

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The long-term prognosis of sufferers varies greatly. Kylie's symptoms might lessen, or even disappear with treatment, or they may progress and spread to more areas of the body.

Kylie says her problems first began in her stomach.

""It actually started in my gut and I would vomit about 30 times a day, things like that, so it was pretty intense," she told Erie News. Her symptoms progressed, which helped her be properly diagnosed.

Kylie will continue to take one day at a time. We'll be praying for her to get her dream trip to the Bahamas and ultimately beat her rare disease.

I've been writing for Shared for 6 years. Along with my cat Lydia, I search for interesting things to share with you! You can reach me at Tristan@shared.com.