“I Had No Idea If I was Going to Live or Die” – Alex’s Teenage Journey with Vasculitis

Meet Alex, from Fort Mitchell, KY, who’s living with GPA vasculitis: 

I was diagnosed in June 2018 when I was 16 years old and in between my sophomore and junior years of high school.

The challenges I faced with vasculitis were plentiful. I woke up one day being unable to bend my knees without extreme pain, making it hard to walk. People would ask what was wrong with me as I was barely able to move between classes, but I did not know. And that was very awkward and difficult to explain.

Eventually, I was diagnosed and, at the time, all I cared about was the marching band at my school. After a long time of begging my doctor and mom, they gave me the okay to participate, but told me to be very careful and relax when need be. When I would take short breaks during practice, my knees and elbows would lock up and it would be hard to get back out and march. It was excruciatingly painful and by the end of the day during band camp (camp days were about 10 hours each), I would be crying and barely able to make it back to the car where my mom picked me up. I tried hiding this as much as possible, though, so that I would still be able to partake. I did not want the vasculitis to prevent me from doing what I loved and being normal and seeing my friends.

Maybe the most difficult part was my prednisone. Right before my vasculitis I had gone through puberty and had just started drawing interest from girls. I never had a girlfriend before but around that May, I started dating someone. Then my vasculitis hit, and I was barely able to move. That made it difficult enough to do normal date stuff and basically do anything but watch tv together. But when I was diagnosed, they stuck me on a large dose of prednisone. At first there were no side effects, and it did nothing but help get rid of the inflammation that was causing my legs and elbows to feel like they were being stabbed constantly, but then my face grew puffy. This was horrible. It destroyed my confidence. My girlfriend broke up with me, and everyone around me had no idea why I looked so different. I even had one teacher who did not recognize me, and he was a coach for me for a whole year on the tennis team. I even had people start to make fun of me for it. Mostly, though, I just got stared at and would every once in a while be asked what had happened. One time I explained it to someone, and they laughed because my face looked funny. This was the worst time for me to go through this, and I have just recently recovered confidence-wise. I still have some body dysmorphia when I look in the mirror. I often see a very round face even if my face is completely back to normal.

One last difficult aspect was the fear of not understanding the condition. I had no idea if I was going to live or die. Researching online was horrible. The only online resource I have found helpful is your organization, the Vasculitis Foundation.

Today, what brings me hope is that I am not alone. Ashton Kutcher releasing the fact that he suffered from vasculitis was huge. It was nice hearing someone known be outspoken and spread the word and knowledge about my rare condition. 

More things that bring me hope are just doing things I have always wanted to achieve despite my condition. I completed a race up the empire state building last year, am graduating UKY in the spring of 2024, and have a girlfriend now that I love. I just want to make sure I never let it get in the way. I plan on running a marathon and doing triathlons soon, and hope to one day climb different Himalayan mountains.

I am going to be working at Plante Moran as a CPA in the Fall of 2024. I love Cincinnati Children’s Hospital so much because they were such a help, have allowed me to stay a patient after turning 18, and have all been so kind to me through my journey. I love my mother especially, because she has always pushed hard for me to get treated properly and has taken care of me throughout my whole journey. She has been to every one of my appointments and has sat by side through every infusion I have had, calling them our ‘Spa days.’ She is very sweet and is my hero whom I look up to more than anyone.