A Conversation With 2 Friends Diagnosed With Vasculitis as Young Adults

Vasculitis patient stories can help the newly diagnosed feel less alone

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by Allison Ross |

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Brandon Hudgins and Ben Wilson are two longtime friends of mine, both with a similar vasculitis diagnosis. We met while volunteering for the Vasculitis Foundation as young adult leaders. Obviously, life looks very different when you’re sick at such an early age.

Now in our 30s, we remain fast friends — and had we never been diagnosed, we wouldn’t have met!

I recently chatted online with them about their disease trajectories. Excerpts of our conversation follow.

AR: Let’s start with the basics of your diagnosis.

BH: I was diagnosed with granulomatosis with polyangiitis in 2008 at 21 years old. I was a college junior in my hometown of Rock Hill, South Carolina.

Over the last 14 years, I’ve had three relapses, but this month, I celebrate four years in remission.

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BW: I was 20 years old when I was diagnosed with eosinophilic granulomatosis with polyangiitis while at home in Wisconsin, in between college semesters. I’m lucky that my disease is in remission now, with minimal impact on my day-to-day life outside of consistent fatigue.

Tell us a little about yourself apart from the vasculitis.

BH: My partner, Ryanna, and I live in High Point, North Carolina, with our three cats. Last summer, I retired as a “professional” distance runner at 34 after failing to make my second Olympic trials in the 1,500-meter race. Since then, I’ve been working full time as a running and strength coach for a club I co-founded with a friend called the High Point Athletic Club, which provides wellness services for runners and athletes in our community. I’m still actively involved with the Victory Over Vasculitis campaign that I started with the Vasculitis Foundation in 2016.

BW: I’m a sports broadcaster based in Las Vegas, Nevada. At this point, my career is my main focus since I work for three to four different networks at the same time and usually have a hectic work schedule. I grew up playing sports, so in my free time, I get out and play golf or tennis or go hiking.

What was a particular formative moment of your illness?

BH: There have been so many! If I have to pick one, it was probably the evening that I found out about my diagnosis. After my doctors called me and shared my diagnosis, I researched it on the internet. In 2008, there wasn’t the robust amount of information that currently exists. I read some outdated stats that scared me away from reading much about my disease for years. Through managing the disease and dealing with so many doctors, eventually, I had to become a student of my disease. Today, I try to stay aware of the latest research and findings, a far cry from my 21-year-old self.

BW: Right before my diagnosis, I made the brilliant decision to go play tennis with my friends, even though I could barely breathe and was struggling with intense abdominal pain and rashes. I ended up in the hospital for two weeks after my body essentially shut down. It was at that moment that I realized just how serious my disease was, and that I couldn’t simply ignore all the negative symptoms.

What do you do to stay happy even when you’re physically healthy?

BH: To me, movement is health. Even when I’m out of remission and feel awful, I remind myself that I might as well do something good for my body. Also, spending time with loved ones. Finding time to unplug, like having a drink with a friend, is what helps me balance all the stress of daily life.

BW: I remind myself as often as I can to appreciate my health and reflect on how far I’ve come since being diagnosed eight years ago. That helps me keep a clear head and not sweat some of life’s frustration. All those years ago, while in the hospital, I promised myself I’d never take my health for granted going forward.

What advice do you have for patients who are diagnosed young?

BH: Your diagnosis doesn’t control your life. Yes, you do have to take it seriously, and yes, you are going to have some awful moments. But your disease doesn’t define who you are. Don’t be afraid to reach out and find someone to talk to. This disease erodes your mental health, so take that just as seriously as you do the physical side.

BW: Know that you aren’t alone. Our disease is a rare one, but there are others out there who have gone through the exact same struggles and know what it’s like to be on heavy amounts of prednisone, for example. There’s a path toward a return to normalcy, but you have to do everything in your power to stay positive in those early days of the disease when it doesn’t seem like things will ever get better.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.


Brian Hickey avatar

Brian Hickey

Thank you for this article and appreciate Ben and Brandon sharing their stories. I'm another "diagnosed at a young age" GPA patient-at 16 years old in 1982. At 56, I've been through it all. I'm most interested in hearing more about how vasculitis patients are dealing with the Covid landscape. The last year has been a big challenge-fighting off Covid and Bacterial Pneumonia, given immune system vulnerability due to Rituxan. Best of luck to all.


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