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.

Jules’s Story

Lupus

Almost 2 years ago, I was really sick, and the doctors kept telling me I just had a virus and it would go away on its own. i was told that for about 2 weeks. I got the COVID-19 vaccine a few weeks before this, so they assumed it was just a common reaction to a vaccine. Eventually things got so bad that my mom took me to the hospital where i got diagnosed with AKF( acute kidney failure). I was in the hospital for 2 months on treatment and different meds. I also was diagnosed with lupus. I still go to the hospital often for treatments, fluids, and tests. It’s hard, and I understand how u feel bc having a chronic illnem so sorry ’m so sorry u have to go through this too. ❤️

Molly’s Story

Anklyosing Spondylitis

For as long as I can remember, I thought exhaustion and pain were just things everyone dealt with. I was always active and motivated, the kind of person who powered through, until my body started sending me signals I couldn’t ignore. What began as stiffness in my back and random flare-ups of pain soon turned into days where even getting out of bed felt like a marathon.

Initially, I was told it was just stress, growing pains, or inflammation from overexertion. I bounced between doctors and specialists, explaining symptoms that didn’t seem to add up neatly on a chart. It was frustrating, not just the pain itself, but the feeling that I was constantly explaining myself and still being misunderstood.

After months (and countless appointments), I finally met a rheumatologist who listened — really listened. Blood tests, imaging, and a long conversation later, I got my diagnosis: ankylosing spondylitis, an autoimmune disease that causes inflammation in the spine and joints.

It was a strange mix of emotions, relief to finally have answers, but also fear of what that meant for my future. I remember sitting in my car afterward, letting the words sink in, realizing that my life would look different than I had planned — but that different didn’t have to mean less.

Since then, I’ve learned how to listen to my body, advocate for myself, and find community in others who understand the unspoken challenges of autoimmune life. My diagnosis isn’t my identity, it’s just part of my story. And that story has taught me strength, empathy, and the beauty of slowing down to care for yourself in ways you never thought you’d need to.

That’s why I started this space — to share real experiences, raise awareness, and remind others that even on hard days, we are never alone in this.

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