Kayla’s Story

MS

Honestly, I had no idea what an autoimmune disease even was until my own diagnosis and journey began. It started around June 2019, when I was 13 years old. My vision had become blurry, and my mom told me it was probably just from watching too much TV. One day, while we were on our way to the grocery store with the windows down, I remember feeling fine — until suddenly, everything went black for a split second. We thought I had just fainted from the heat and didn’t think much of it.

About a month later, as we were getting ready for bed, my mom noticed that my face looked lopsided. We went to the ER, and the doctors said it was Bell’s Palsy. I was prescribed medication and given an eye patch because I couldn’t close one eye. While the medication seemed to help at first, I started becoming very clumsy and losing my balance often.

We went back to the ER, where they told me it was vertigo and prescribed medication for that, but it didn’t help. Soon after, I had an appointment with my primary doctor because I kept falling. That morning, I lost some function in my legs and couldn’t get dressed by myself. My mom had to help me to the car, and by the time we arrived, I couldn’t even stand. I was sent to the Children’s Hospital of Augusta.

I don’t remember much after that until I was officially admitted. They ran neuro exams, CT scans, bloodwork, and MRIs. The scans showed lesions on my brain, so they did a spinal tap and diagnosed me with ADEM (Acute Disseminated Encephalomyelitis), another autoimmune disease. I was started on steroids and sent home with a taper. It worked for a little while—until it didn’t.

My symptoms came back, but worse. I was back in the hospital for two weeks, going through multiple tests, all negative except for what they already knew. They decided to do another spinal tap, which finally came back positive for MS. By then, I had missed most of 8th grade and was doing homebound schooling along with physical therapy three times a week. During that time, I had to relearn how to walk, talk, and even write again.

I was referred to a specialist and started taking Gilenya daily. It’s been almost six years since everything began, and thankfully, I’ve had minimal symptoms and flares. I’m forever grateful for that. My main symptoms now are fatigue, restless legs, soreness, and migraines.

I hope my story inspires others to share their own journeys and know that they are not alone in this battle.