Caroline's Story

My name is Caroline Sloan, and I was diagnosed with PKAN in 2021. 

I have had a speech disorder since I was eight years old. I am a diagnosed clutterer, but we didn't know what caused it. We blamed it on the changes in my life around that time. I have always been clumsy and have fallen multiple times with no explanation for why.

Fast forward 35 years, and I started having issues walking my dog in January 2020. By that summer, my husband and mother said I had to get some help. I went to my primary care physician, who sent me to the neurologist. After two MRIs and a CAT scan - the neurologist diagnosed me with PKAN after seeing the Eye of the Tiger on my MRI. My husband started researching and found the team at OSHU. They gave us hope!

I am now on good drugs - Amantadine and Baclofen that help me to walk around okay, and I can now take my dog on a walk by myself! I have been told that my disease progression should be steady for a while, and then it will go downhill again. I consider myself really lucky because I am an atypical case!