One world, one love, and one walk. This weekend thousands of people will join forces for one goal: to raise money to battle type 1 diabetes (T1D). The annual Juvenile Diabetes Research Foundation (JDRF) One Walk will be held Saturday, April 7th at Nathan Benderson Park and the community is invited to participate by walking, donating, supporting a team, or coming out to enjoy the music, food vendors and entertainment. We had the opportunity to discuss the event with Reed Spahn, a local teen who lives with T1D and will be participating in the walk. If you would like more information about One Walk Sarasota, please visit their website at http://www2.jdrf.org/site/TR?fr_id=7246&pg=entry
Reed, thank you for speaking with The Sarasota Post. Can you tell me about your journey with Type I Diabetes?
The pleasure is mine. My journey with diabetes is a process, one that continues with highs and lows (pun intended). It started out slowly, when I was diagnosed over 3 years ago at the age of 12. I was stubborn, resistant, and unhappy because I was unwilling to accept this disease as a part of my life. Through perseverance and support from several groups of people who understood the struggle, I was able to see a world of different possibilities. My involvement with JDRF led to me meeting so many outstanding people and wanting to advocate for a cure. I made an important decision – I refused to let this disease hinder the way I wanted to live my life. And, I also wanted to help others understand that it didn’t have to hold them back. Type one is like a weight attached to my ankle, one that I will pull with me until a cure is found. But, carrying that weight will only make me stronger. Therefore, I became an advocate for JDRF. I want to serve as an inspiration and motivate others to take a stand against type one diabetes and to show that anyone can achieve spectacular things, even with a nonfunctioning pancreas.
What are some of the daily obstacles you deal with because of diabetes?
A day in the life of a type one diabetic is not set in stone. I’m a sophomore at Pine View School, with a rigorous schedule. I also lift weights and work out almost every day, in addition to being involved in jazz band and playing guitar in a professional rock band. My schedule is hectic and some days I have great outcomes, with optimal blood sugar control and carb intake; others are a complete disaster. Unexplained high and low blood sugars come frequently and without warning. Even when they are expected, they are still unpleasant. Low or high blood sugars both make me feel sick. The equipment for managing diabetes care, like any other machine, isn’t perfect. I wear two devices inserted under my skin and attached to my body 24/7. There’s never a break. I must carry supplies with me everywhere. Without a constant stream of insulin, I would die. Insulin pump failures and nonfunctioning sites with a continuous glucose monitor can lead to an entire day of trying to keep everything under control, take a great deal of time, and become a huge ordeal.
Type one is extremely unpredictable, and people often confuse it with Type 2 diabetes. Type 1 is an autoimmune disease that has nothing to do with diet or lifestyle, and right now, there’s no cure. I constantly monitor my blood sugar using my CGM, which transmits a reading to my phone and watch every 5 minutes, with alarms to warn me of dangerous blood sugar levels. Everything impacts my blood sugar, from what I eat, to my activity levels, careful calculations of just the right doses of insulin at precisely the right times, and everything constantly changes. It’s wearing on me and my family, especially overnight or when I have even a minor illness – T1D doesn’t play nice and I still end up at the hospital. It’s scary sometimes knowing that things will go wrong, and especially knowing that at any given moment, I could be in a life-threatening situation. But, it’s comforting to know that I have the support and the knowledge to take care of myself even in intensely stressful situations. The irony is that I always need a source of glucose with me, like juice or glucose tabs, to treat a low blood sugar. Sugar saves my life several times every week, and often several times a day! People who don’t live with this disease don’t understand what an incredible and relentless burden it is. That’s one of the things I hate most about T1D – the burden and worry it causes for my family and friends.
Can you discuss your participation in JDRF One Walk? How do you think this year’s event will compare with past years? Nathan Benderson Park is a great venue, how many people do you anticipate will be attending?
My participation in the JDRF One Walk started out at a crawl. I attended my first walk as a member of another type one teen’s team. I was still nervous and embarrassed about my disease and sharing it publicly. However, the walk changed my entire outlook. I suddenly felt inspired by the people my age that I saw before me all advocating for the same noble cause. The following year I created my own walk team called “Reed’s Rebellion”. I was amazed at the number of friends and family who showed their support for curing T1D by walking and donating. My rock band, Steel Relic, even played last year at the One Walk. This year’s walk is going to be a terrific event, with 1,500 to 2,000 walkers expected. With growing publicity, awareness for JDRF and type one diabetes research also continues to grow. As the walk gains more attention, more people will continue to show support, which is why advocacy for events such as this one is so important. Just recently my walk team gained the corporate support of PPI Technologies Group, causing it to grow by a significant amount – and Nathan Benderson Park is a fantastic place to put JDRF on display!
What can the public do to get involved in the walk this weekend if they haven’t already committed to participating?
There are many ways to get involved in the One Walk this weekend even if you haven’t already committed. It’s never too late to register to walk! You can register to walk directly from links on the JDRF website, or you can donate to a team (“Reed’s Rebellion”!) or participant if you can’t make the walk yourself. You can also go to the JDRF website to learn more about the research and new developments, as well as sign up to become an advocate. You’ll then receive action alerts where you can help use your voice to influence our efforts to end T1D. We really can’t do this without you!
Does your family participate in other activities throughout the year that shine a light on research and funding for Type I diabetes?
My family is heavily involved in almost every local JDRF fundraising event. My entire extended family consistently donates to all fundraising opportunities that arise and responds to action alerts. I’m a Youth Advocate in our local chapter and this past summer my mom and I travelled to Washington D.C. because I was selected to represent the state of Florida as a 2017 JDRF Children’s Congress Delegate. I was able to advocate to our state’s senators and representatives to support federal funding for type one diabetes research, something that is critical to a cure. My mom is a mentor to families with newly diagnosed children and her firm sponsors JDRF events, my grandma manages our local grandparent support group, and my entire extended family and friends attend and sponsor local JDRF galas and events. I’m lucky to be surrounded by a great group and I want to give back to not only those who have helped me, but to those who are struggling with T1D. Living with a chronic disease is never going to be easy and I want other kids to understand that we all struggle, it’s ok to ask for help, and then we get back up and keep fighting! We must help each other be resilient. I volunteer at events and speak to younger children with T1D and our local donors every chance I can get.
As a young man living with Type I diabetes, do you foresee a time when will be eradicated and can you discuss any state-of-the-art medical treatments that you are familiar with?
I do foresee a time in the future when type one diabetes can be eradicated. I don’t know exactly when, but I know scientific research has exploded recently in revealing new forms of treatment for type one diabetes that could pave the way to a future cure. Currently, JDRF is focused on research for new technologies and medical treatments for type one that could tie directly into a cure or make every day life for a type one diabetic more manageable. One serious state-of-the-art advancement is the FDA approval of the Artificial Pancreas system, which is a type of insulin pump integrated with the continuous glucose monitor that makes automatic adjustments in insulin delivery to function, as the name implies, like an artificial pancreas. It helps manage overnight care and stabilizes blood sugar control to keep its user in an optimal blood sugar range. In addition, JDRF is highly focused on Beta Cell Replacement Therapy, which is studying and applying beta cells in the pancreas and prompting them to produce insulin to cure diabetes for months, even years, at a time. This research is still ongoing, but with more funding, it could lead to a definite cure. In the meantime, JDRF research is also focused on improving glucose control, prevention of T1D (developing potential vaccines), and treatments to prevent, reverse, or slow down T1D complications, such as kidney, eye, heart, and nerve diseases. I believe I will see a cure. More than anything, I want to stop this disease from robbing more children of a carefree childhood. Until then, JDRF also advocates for keeping those living with T1D as healthy as possible. That means calling on insurance companies to provide affordable insulin and tools, the right to choose insulin pumps that work for them, and coverage for all the new technologies that will result from the research. Funding and donations to JDRF have made a huge impact directly on the lives of those living with T1D.
Lastly, Reed, we want to thank you for your time and wish you a safe and successful time in the upcoming JDRF One Walk.
Thank you very much for allowing me to share my story and to advocate for a crucially important cause. I hope for a future very soon in which children and adults alike diagnosed with type one diabetes no longer have to worry about blood sugar control, carb counting, or insulin injections, and don’t have to feel scared of this disease. I believe that through the support of everyone, type one research will produce a cure. Join me and advocate for JDRF. Join me in turning type one into type none!
Photos courtesy of JDRF One Walk Sarasota Facebook page.