Riding On Insulin founder, Sean Busby, is a professional backcountry snowboarder with type 1 diabetes who travels the world exploring remote corners of the globe on snowboarding expeditions.
In 2004, while training for the 2010 Olympics, Sean endured a complicated diagnosis of type 1 diabetes. Considering leaving snowboarding all together, Sean was inspired by reading stories he found through JDRF’s Children’s Congress. It was the stories of 5- 7- and 13-year-olds that inspired him to keep living his dreams despite living with diabetes. He founded Riding On Insulin—which is now a nonprofit organization—to honor all the kids who inspired him to keep living. Today, Sean’s wife Mollie runs Riding On Insulin and Sean makes appearances at the organization’s global action sports programs (including ski/snowboard camps) for kids, teens and adults living with T1D, while managing his personal backcountry snowboarding career. In February 2014, Sean became the first person with T1D to backcountry snowboard all seven continents. His expeditions include trips to Morocco, Antarctica (twice!), Patagonia, Iceland, Norway, Japan, Kyrgyzstan, Alaska, Tasmania, and more. Sean graduated from the University of Utah with a degree in Health Promotion and Education, with an emphasis on diabetes.
Sean and his wife, Mollie live just outside Whitefish, Montana in a yurt with their two dogs, Daisy and Glacier.
Sean in Norway
Alissa: How old were you when you started snowboarding and how did you know that this would be your profession?
Sean: I started snowboarding when I was 12 years old. Growing up in Southern California, beach sports should have been my thing. But for some reason, I was attracted to the mountains. A friend introduced me to the sport and I instantly loved it, even though the mountains were more than two hours away from my home. After a lot of pleading, my father would let me leave school early so I could practice in the mountains, and I would train until 10 p.m., squeezing in homework during the long drive home, and finally going to sleep after midnight.
By age of 14, my dad challenged me to compete. I excelled in the competition scene and began to pick up my first sponsors. Two years later, I was given the opportunity to go professional with snowboard racing. I relocated to Whistler, British Columbia to train, compete and ride professionally. I then relocated to Steamboat Springs, Colorado after I graduated high school to train further. It was there that I was diagnosed with T1D.
Alissa: Tell me about your career leading up to the diagnosis of T1D?
Sean: My discipline was on the racing side of the sport, with a focus on the 2010 Olympics. I trained with prestigious athletes, which included members from the US team. Up until that moment, I had been healthy for my entire life. And then during the 2003-2004 winter seasons, I noticed on and off symptoms of a mystery illness. I figured I caught some weird bug from my teammates that were returning back from Europe.
After the U.S. National Championships in Breckenridge, Colorado, I became violently ill. I couldn’t stop vomiting. I was scheduled to fly to Quebec the next day for the Canadian National Championships. Luckily, I woke up feeling much better so I just assumed it was a 24-hour bug. I was able to go to Canada and participated in a great competition.
It wasn’t long until the mystery illness hit me again. I was constantly thirsty. I rationalized that the thirst was caused by the start of spring, combined with warm weather and training hard. I would down gallon-size jugs of grape juice, and feel horrible afterward—causing me to miss morning training sessions. The vomiting started again, too. I clocked it – two hours after I ate anything, I would get sick. I actually became afraid to eat. Finally, I went to the emergency room. The doctors attributed by illness to some bad bug. They gave me anti-nausea medication and sent me home. By the next day, I was vomiting again and unable to hold any food down.
I visited the ER seven times within two weeks. Eventually, I was admitted to the hospital. During my 12-day stay, I lost more than 30 pounds and developed pneumonia. I was discharged to my parent’s care and went home to California to be treated by a general practitioner. The doctor ordered a glucose tolerance test, suspecting diabetes. It was shocking when a nurse called 24 hours later telling me the labs came back fine.
Alissa: They said you were fine?
Sean: Yeah. I have no idea why they told me that. A family friend who is a cardiologist questioned it, too. He told me to get a copy of my labs so he could consult with a few colleagues for a second opinion. I asked a nurse for a copy of records, and noticed red flags all over the place. I questioned the labs and the nurse grabbed the doctor, who apologized to me and explained that I had Type 2 Diabetes.
Alissa: So you were misdiagnosed?
Sean: Yeah. Big time. Being 19 years old, I grew up watching TV shows like “House” and “ER” where the sick person is diagnosed within 30 minutes. I assumed the doctor was right, and had no reason to question the diagnosis. I was advised to check my blood sugar and take pills daily. But, the vomiting started … again. Knowing my blood sugar was still high, I tried adding another pill to my regimen. When that didn’t work, I tried to eat an all protein diet. Restricting carbohydrates only led to more immense weight loss. I was wasting away. None of my clothes fit. Laying on my parent’s couch, doing nothing – I had to face the reality as some of my sponsors cut me from the team.
I became so depressed that I was determined to return to Colorado to get back into the gym. It was on that flight back to Colorado where I almost passed out. I was rushed to a teaching hospital, where I was correctly diagnosed with Type 1 Diabetes on July 3rd — my mom’s birthday.
Alissa: What I don’t understand is why they couldn’t detect it in a blood sugar finger stick?
Sean: When I was hospitalized for the 12 days, they did suspect diabetes but I also had pneumonia. Back then, Type 1 Diabetes was labeled as juvenile diabetes and Type 2 was adult onset. I think it was the theory that Type 1 only occurred in children and Type 2 was in adults. Being 19, maybe I was in a gray area? They did notice that my blood sugars were high and I had ketones in my urine.
Alissa: You had mentioned that you became depressed. How did you handle your diagnosis emotionally? How did your family help you through it?
Sean: It was a struggle. I was so angry at the doctors for misdiagnosing me. My body was shutting down, heading towards death. I wasn’t getting any nutrition. It wasn’t until the first insulin shot that I noticed an immediate difference. It was the most amazing feeling I’d ever felt in my life.
So I set out to learn everything I could about T1D. I started going to the gym around 4:30 a.m. because I was really embarrassed by how skinny I was. I had lost so much muscle mass.
I was also doing a lot of research, reading story after story about children as young as two years old living with T1D. Those kids inspired me. I wanted to give back to them what they had given to me. Winter sports are my passion and that is where the idea of founding “Riding On Insulin” came from. I wanted to host a ski/snowboard camp for kids & teens with T1D.
Alissa: After your initial negative experience with doctors, how did you find an endocrinologist? And, what kind of regimen did they put you on?
Sean: I wound up staying with Dr. Ping Wang, who happens to be the doctor that correctly diagnosed me. He is the chief of endocrinology at UCI Irvine California. It was Dr. Ping Wang who helped me recognize and overcome the burnout that comes with chronic illness. He taught me how to deal with the emotions of feeling alone and isolated. I also started seeing a dietitian.
My insurance didn’t allow me to get on a pump immediately – which is OK because I really didn’t want it. I had read this article about a professional football player who had Type 1. He had talked about being attached to a pump. It was that word ‘attached’ that hit me hard. I started crying. I couldn’t imagine having something attached to me, reminding me every minute of the illness I have.
It wasn’t until I started volunteering at diabetes camps that I realized if all these kids could handle a pump – so could I. If I wanted to take my performance to the next level and start gaining back muscle mass, then I was going to have to try it.
Alissa: Which pump did you go on?
Sean: At first, I was on a traditional tubed pump, but I have since switched over to the OmniPod tubeless system, and it has been the best compliment to my training as an athlete, especially for winter sports.
Alissa: Do you feel a huge difference or do you sometimes wish you could take a pump break?
Sean: I pump has helped me immensely. In the beginning, I was constantly traveling to competitions in varying time zones and I opted to take shots. But, if the forecast was wrong then my blood sugar would fluctuate too much, causing severe lows. The pump stopped about 80 percent of the lows, giving me much better control, and lowering my A1C substantially. I could set different basal rates for different sorts of exercises. I recognized that for each individual living with T1D, it’s all about finding the technology that works for them.
Alissa: Do you think you’ll ever take a pump break or are you content with it?
Sean: I used to do that when I was on a tubed pump. I would go on pump vacations. The reason I switched to the OmniPod is because it’s tubeless and can attach directly to my body. With all of my remote snowboarding expeditions around the world, I have to worry about insulin freezing. The Pod is connected to me and my body heat keeps it warm so I can focus on my performance without fear of it freezing up. I don’t have to have anything else hanging on me. I also just recently within the last two years, started using a Dexcom CGM.
Alissa: What do you think is the positive impact Dexcom can have on training and competing or even non competing?
Sean: I say if you’re an athlete, you should get on it. Even if you’re on shots, a CGM can benefit your training. When you check your blood sugar with a meter, that’s like one data point. Then another two hours, you get another data point. A CGM like the Dexcom provides a data point every five minutes, so it really fills in the blanks for me. I’ve learned so much more about my ideal basal rates at different times of the day and night. It’s just been a game changer.
Alissa: Do you have a specific diet that you follow? Where do you like to see your blood sugars before and after training in your competitions?
Sean: I’m a big fan of oatmeal in the morning especially when I’m going out to exercise. It enables me to maintain a nice, stable blood sugar.
Alissa: Lets go back to your snowboarding career. When did you move away from the competition scene?
Sean: After the correct diagnosis, I turned my focus to the Olympics. However, I was getting burnt out on snowboarding. I wasn’t having fun anymore. After I graduated from the University of Utah and was training with the Park City snowboard team, I was invited by some pro riders to join them on a backcountry