Professional Snowboarder Sean Busby Opens Up About Type 1 Diabetes and Lupus
Editor’s Note: May 10 is World Lupus Day. The #NowYouSeeMe Campaign is shedding light on multiple autoimmune diagnoses—inspired by professional snowboarder Sean Busby. This is his story.
As a child, I believed I was invincible.
Sure, bad things happened to other people, but not me. Then in high school, my world turned upside down when my older brother, Jamie, died from a brown recluse spider bite. I took solace in the mountains—the same way Jamie did growing up. As I dealt with my grief, I leaned on my love of snowboarding, which eventually led into a full-time career as a professional athlete.
Then at 19, only three years after Jamie died, I was unknowingly misdiagnosed with type 2 diabetes and went through three months of constant diabetic ketoacidosis. I was at my wits end—literally, and figuratively. For all I knew, my professional snowboarding career was over and the meds my doc gave me weren’t working. Miraculously, after nearly passing out on an airplane, I was rushed to a nearby hospital and given the correct diagnosis of type 1 diabetes on my mom’s birthday.
It was July 3, 2004, and I’ll never forget that first shot of insulin and how amazing it made me feel. (I’ll also never forget my mom’s birthday as long as I live!)
Under new medical care, I set out to find a community of other people with type 1 diabetes (T1Ds) to see if I could still be a professional athlete. What I found was a wonderful world of kind-hearted families, kids and adults living with exactly what I had. Through sharing stories and tips, I learned I could still be who I wanted to be, but it was going to take lots of responsibility and learning about my “new body.”
I was so grateful for the stories of those kids and families—they showed me I could still be a pro snowboarder, so I wanted to find a way to give back.
Enter my solution: Riding On Insulin. Riding On Insulin is nonprofit organization that empowers, activates and connects the global T1D community through shared experience and action sports.
Through living with T1D and shredding with kids at Riding On Insulin’s ski/snowboard and mountain bike camps—which we run in over 12 locations in three countries around the world today, I learned that managing a chronic disease takes a community … and that a community is the next best medicine to insulin.
Fourteen years after my diagnosis and that message still holds true. I stress the importance of community to anyone that has a chronic disease, regardless of what it is.
Yet, on top of snowboarding, insulin injections, pumps, finger pricks and the constant battle with blood sugars, I’ve also battled a mysterious illness that doctors struggled to pinpoint. Living with T1D, we are (unfortunately) vulnerable to a host of other autoimmune diseases such as celiac disease, rheumatoid arthritis, multiple sclerosis, lupus, thyroid diseases and more.
On a search to reveal the mystery illness, I went to Mayo Clinic in Minnesota, to a Cystic Fibrosis clinic, and a Multiple Sclerosis specialty hospital. I was tested for Addison’s Disease. My specialists have chased after muscular dystrophy diseases, and I had an emergency liver biopsy to rule out an autoimmune liver disease.
All these tests—and so many others along the way—came back negative. It was me, T1D, and this mystery disease. And snowboarding. Always snowboarding.
Eleven years later, in 2016, the mystery was finally solved. After dealing with severe abnormal headaches, rashes on my face and liver/muscle enzyme abnormalities in my blood work, a blood test indicated high titers (a test that detects the presence and measures the amount of antibodies in blood) of Antinuclear Antibodies. It also detected extremely high titers of Anti DSDNA antibodies (antibodies created against your own double stranded DNA), and low C3 and C4 compliment levels.
That’s medical speak for what my rheumatologist diagnosed as systemic lupus erythematosus. I call it SLE or lupus for short. I was immediately started on heavy treatment and went back to square one of learning about a new diagnosis.
What I discovered was that SLE is extremely rare in men. It mostly occurs in women, at a ratio of 1:10, men to women. The Lupus Foundation of America estimates that there are less then 500,000 men in the world with lupus. It has also had a strong presence in the media with famed singer/songwriter Selena Gomez undergoing a lifesaving kidney transplant due to lupus.
With lupus, your body doesn’t just attack the pancreas; it attacks any organ, at any time. Basically, my body has turned against itself. And nearly half of people with SLE have photosensitivity, which is a fancy way of saying that we are allergic to UV rays—from the sun and household lights.
Yet again, snowboarding saved me. I spend more than half the year covered from head to toe on the mountain, and as of this year, the other half of the year in Alaska, because the UV isn’t as strong. It’s also a valid excuse for me to maintain my beard (haha!).
The last two years have brought some of the hardest challenges of my life—challenges that rival the loss of my brother. At the age of 31 (my first year with SLE) I had a blood clot scare in my left lung that sent me to John Hopkin’s Lupus and Antiphospholipid Center in Baltimore, Maryland. Thank goodness it wasn’t a blood clot.
Then in late 2017, at age 33, I learned SLE will prevent me and my wife, Mollie, from having children naturally. The ultimate blow for our family.
I’ve tried to reach out to a community online, but have found few men speaking out with lupus. When times get hard, I crave that connection I have with my fellow T1Ds. And oddly enough, as snowboarding saved me when my brother died, T1D has saved me through this lupus diagnosis.
While lupus has taken over so many freedoms, thankfully, T1D has taught me how to manage a chronic illness without giving up on those freedoms. Just as I did when I was 19, I adjusted my life to continue doing things that I love.
Today—May 10—is International Lupus Day. And while I still hope for a community of men going through T1D and lupus, I realize that I’m not alone in this craving for a community. I’ve heard that one in four people living with T1D will be diagnosed with another autoimmune disease, and one in three people living with lupus will gain another. It’s like an awful version of hoarding that we wouldn’t recommend to anyone else!
You see, the community I’ve been craving has been in front of me all along: It’s anyone who is living with two or more autoimmune diseases. I can talk to someone that has both T1D and celiac, or rheumatoid arthritis and we will have a mutual understanding of how we learn to prioritize our conditions and manage more than one complicated condition into our lives.
Compassion, hope and love all come from sharing from our hearts. So, from today forward, I am committed to building a community through this double diagnosis designation. I want to hear from you—I want to see you. We all do. We aren’t invisible, nor should we live that way. We can be open and talk because there are people like me and countless others still looking for their community. The only way to find one another is to share from the heart.
Read more about the #NowYouSeeMe Campaign and learn about Type 1 diabetes and other autoimmune diseases.
