Albion Teen With Rare Disease Released from Hospital for Christmas
Kylie Allen-Kulyk was released from St. Vincent's Hospital around 6:30 p.m. Sunday evening. She has been in and out of hospitals for eight years for a rare disease that was misdiagnosed for seven years. Kylie has Stiff Person Syndrome, which is an autoimmune disease that causes extremely painful muscle spasms.
Kylie said the symptoms started in her stomach and then got worse, "It actually started in my gut and I would vomit about 30 times a day, things like that, so it was pretty intense. Through the years it progressed and showed more and more symptoms of something."
Stiff person syndrome is an autoimmune disease. This means that the body has antibodies specifically made to attack good proteins. Those proteins are found in some neurons that are linked to creating a substance in the body responsible for controlling muscle movement. It causes muscle spasms than can be long and extremely painful; the force of some spasms can fracture bones.
She's had a team of doctors at St. Vincent working with her to treat her symptoms and she's been participating in a study at John's Hopkins to learn more about the disease. Kylie was asked to partake in the study because she is one of the youngest people with Stiff Person Syndrome and has some of the most severe symptoms. Most people with the disease fall between 30 and 60 years old.
Kylie has had plasmapheresis twice, which the National Kidney Foundation describes as a process that filters the blood and removes harmful antibodies. It is a procedure that specifically removes antibodies from the plasma portion of the blood.
As part of her treatment, she also has to have weekly intravenous immunoglobin (IVIG) treatments. IVIG treatments are created from blood and plasma donations. It takes between 1,000 and 1,500 donations "per batch" to create the treatment, which essentially replaces Kylie's antibodies with new ones that won't attack neurons in her body.
Kylie and her family are extremely thankful for all of the doctors at St. Vincent and John's Hopkins, as well as the Make A Wish Foundation and all of the many people who continue to support her through her fight with the disease. Make A Wish is sending Kylie and her family to Atlantis in the Bahamas, but only if she's cleared to go when the time comes.
For now, she's taking things day by day and hoping to raise as much awareness for Stiff Person Syndrome as possible to help find a cure.