"I can't thank you enough, for the people who do donate because at the end of the day you saved my daughter's life. You truly are our saving grace."

- Jill Kulyk, Kylie's Mother

"You are helping me, you are helping save lives, you are our hero." 

- Kylie Allen-Kulyk

Kylie's Story

Kylie Allen-Kulyk was diagnosed with a rare autoimmune disorder called Stiff Person Syndrome in 2017. Kylie battles with symptoms like frequent and painful muscle spasms that can carry on for hours. Sometimes, these muscle spasms are so strong that they can fracture her bones or tear ligaments. Kylie shared, "When I have what I call my attacks, my parents or people at the hospital have to hold my body so my bones don't break or my ligaments tear."

She was part of a research study involving the transfusion of blood products, like plasma, to help individuals with Stiff Person Syndrome. Through this study, they found that plasmapheresis has the ability to reduce these attacks and mitigate the pains that Kylie experiences almost every day. She receives donated blood products regularly.

Kylie dedicates her time to being an advocate for individuals with Stiff Person Sydnrome. She takes any chance to raise awareness about the struggles and her treatments on her social media, on news outlets, and at community speaking opportunites. Kylie even had the opportunity to give advice to celebrity Celine Dion, who was diagnosed with Stiff Person Syndrome in 2022.

If you would like to follow along with Kylie as she paves the way to a world that is more aware of rare disorders like Stiff Person Syndrome, we encourage you to visit her social media pages down below: