This is the second and final part of a 2 part interview of Professional Snowboarder and T1D Sean Busby. Click here to read the first part Professional snowboarder Sean Busby accomplishes his dreams as a Type 1 diabetic (T1D)
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 Busy (photo courtesy Sean Busby Facebook page)
Alissa: I’d like to talk about your latest diagnosis. When were you diagnosed with Lupus and how are you managing it?
Sean: When I was going through that whole complicated diagnosis in Colorado at the age of 19, there were different blood abnormalities. All of the different specialists viewed me as an enigma that they were trying to figure it out. I was sent to the Mayo Clinic in Rochester, Minnesota where I was tested for every autoimmune anomaly in the book.
Flash forward to August of this year, when I finally got diagnosed with Lupus. One in ten people that have lupus are men, which means it affects about 500,000 males in the world. So, it is actually very rare for a man to be diagnosed.
Alissa: What were your recent symptoms that led to it?
Sean: Most recently, I had gotten back from the Arctic Circle in Norway where there’s 24 hours of sunlight. I had suffered from debilitating headaches, which I had never had before. A doctor detected really high multiple enzymes in my blood. I was immediately referred to a neurologist, who thought I might have some sort of muscular dystrophy. Tests now found a specific antibody that came back four times the normal value – which is only seen in a person who has Lupus. Looking back at everything, it all makes sense.
As a result, I’m on a heavy dose of anti-malarial medication to protect my body’s organs. I’m also on a bunch of different supplements. If the disease attacks my liver and kidneys again, I could have to be treated with chemotherapy and prednisone (steroids). My latest check up revealed that the Lupus is heading toward a “a remission like state” though remission doesn’t occur in Lupus. I know that a flare up can be caused by over-doing exercise. I am also photosensitive – basically allergic to the sun. Knowing that the sun goes down around 11 p.m. and rises before 4 a.m. in Northwest Montana during the summer, I have to really protect myself. Winter, it is always dark, so that is great.
Alissa: What is a flare up like? Is there pain, side effects?
Sean: The pain is excruciating. The headaches are debilitating. My body can’t move because everything hurts. I start running fevers and get very ill, depending on what organ it’s attacking. If it happens to attack my skin, then that is visual because of the rash which is coupled with joint pain. I’m having to really, really tune into my body, but having Type 1 Diabetes, tuning in is something I’m accustomed to.
Alissa: How does it affect your blood sugar?
Sean: It definitely affects my blood sugar. When you get sick with Type 1, your blood sugars start rising. But, right now my rheumatologist and I see Lupus as the big gorilla—not T1. My doctors monitor my health as a team. Right now, I am searching for psychological support. There is a men’s hotline that I call into. It has helped. I realize that there are some who are afflicted with really severe symptoms. Whatever my situation may be, there is someone who is suffering a lot worse. You have to accept that “it is what it is” and stop being consumed with the worst case scenario. If you don’t then you won’t get to live the life that you want to live.
Alissa: Currently, emotionally and physically, are you handling it fairly well or do you still have your struggles?
Sean: I still have my struggles. I’m trying to get ready for winter. This summer was a wash for me. I didn’t go to New Zealand because I started treatment. I was also really weak from lack of exercise. I was able to snowboard the other day for the first time in a long time and it was an amazing feeling. Just being connected to that snowboard again was … I was almost ready to cry.
Alissa: Do you climb with people so that you have that emergency support too or do you like to go alone?
Sean: I like to climb with people so I’m sure to have emergency support at all times. This diagnosis is so new to me that I need to have others around. Eventually, I’ll get back to doing some stuff solo—as long as it’s in areas that are avalanche free. If I’m in avalanche terrain, I have to always have a partner.
Alissa: What advice would you give for people who are living with Type 1 Diabetes and aspiring to be athletes like yourself?
Sean: Be proactive. Find out what is available to you. Get involved. Talk to others that have this. Try to connect with a local organization because they can really provide you with inspirational people to share advice with. On top of that, if you want to be active with T1D, check your blood sugar. Check and learn what your body does in activity. That’s the solid piece of advice that I did that I learned. It’s just knowing what my blood sugars are doing, I really learn how my body interacts with exercise. Its check, check, check and check some more.
Alissa: Thank you so much, Sean. You’ve given me so much valuable time and I really appreciate you and all that you do and together, I hope that we can help make a difference because you certainly have to me and I can’t thank you enough. You’re really, truly, a very special person and if you don’t know it, I’m hoping that somebody will tell you so or you could see so because it really is wonderful what you do. Thanks so much and I appreciate it.
Sean: No problem — thanks for the interview.