Today’s post is a bit out of the ordinary, but bear with me … I want to recap what I learned last weekend for my own benefits, as well as for those of you who may be interested in learning more about Type 1 diabetes (remember what I said about continuous learning?)
Many of you know that my younger sister Lindsey has Type 1 diabetes, which is the reason I am so passionate about the cause. You may remember when I rode the Tour de Cure 62-mile bike ride last year in honor of diabetes (sadly, I had to miss it this year due to what I’m about to talk about!). Kevin and I do our best to support a variety of causes, but diabetes research is always at the top of our list. (picture source)
This year, I got the opportunity to go with my parents and sister to the Type One Nation conference in Austin. Of course, I wanted to go to support my sister, who flew in from North Carolina, but I was also excited to learn more for myself, my sister, and my current and future Type 1 clients.
The conference did not disappoint – it featured some very influential names in the field of diabetes advocacy and research, including Dr. Richard Insel (Chief Scientific Officer of JDRF), Nicole Johnson (Miss America 1999), and several fascinating endocrinologists, doctors, diabetes educators, and more.
Type 1 Diabetes: The Basics
In true Lyons’ Share fashion, I want to share my top 7 takeaways from the conference with you, but first I’ll give you the most simplified description of what Type 1 diabetes actually is. Type 1 is the type of diabetes that used to be called “juvenile” diabetes, since it is most often diagnosed in children or adolescents (although can be diagnosed in adults as well!). The pancreases of Type 1 diabetics stop producing insulin all together. We’re not exactly sure why this happens, although most people believe that it is a combination of genetic predisposition, environmental triggers that are yet to be determined, and potentially the introduction of a virus. When a person’s pancreas stops producing insulin, this person will need to inject insulin into their bodies for the rest of his or her life. Unlike Type 2 diabetes, Type 1 diabetes cannot be treated or managed with food, lifestyle, or oral medication (although carefully choosing food and exercise can, of course, help keep the Type 1 individual healthier and manage symptoms). The JDRF website has a lot of great information if you’re curious.
Top 7 Takeaways from Type One Nation Conference
- JDRF mission: I learned a lot about how JDRF splits its time and resources as an organization, which is a balance between lessening the burden for those living with diabetes today and finding a cure and preventative measures. The mottos “less until none” and “turning Type One into Type None” were repeated several times throughout the weekend, and I appreciated the dual mission. I want more than anything for my sister not to have to deal with her diabetes every day, but I also want future generations not to have to worry about diabetes.
- Scientific advancements: My family was fortunate enough to attend a dinner the night before the conference with Dr. Richard Insel, who spoke a lot about the pipeline of scientific advancements in diabetes research. I learned about fascinating breakthroughs like the artificial pancreas (which seems to be very close on the horizon!), encapsulation (which would place insulin-producing beta cells in a small capsule in the body that prevents autoimmune rejection), and smart insulin (which would only be released when needed). (picture source)
- Relatives of diabetics and TrialNet study: Did you know that close relatives of Type One diabetes are at 10-15 times increased risk for developing Type One diabetes themselves later in life? I didn’t know the statistics were quite that high, and at first it was a bit alarming. However, when I started learning more about it, I was excited about the “Pathway to Prevention” TrialNet study, which is a massive study of those at high risk for developing diabetes, which is aiming to identify lifestyle factors that trigger the onset of diabetes. I gladly participated in the trial, and will commit to blood testing every 6 months if I have any of the indicators of high risk.
- A unique drug: I learned that insulin is the only drug that can kill you if you receive too much of it, or too little of it. Type One diabetes management is all about striking the best balance possible between blood sugar and insulin dosage … and that balance has to be struck every minute of every single day, with no breaks. On a somewhat related note, I learned that the average drug costs about $1.5 billion by the time it gets to market (with drug failures included in the average). Wow! (picture source)
- No limits for exercise: One of my breakout sessions was on “Managing Blood Glucose During Exercise,” taught by Gary Scheiner, the 2014 AADE Diabetes Educator of the Year. I learned a ton during this session that may be applicable if I have Type One running coaching clients in the future (I currently have two diabetic health coaching clients!). However, one of my favorite takeaways from this session was that there are no limits to what a Type One diabetic can achieve with careful blood glucose management. A marathon? Sure! Ironman? Let’s do it! Scheiner was encouraging that, while diabetes might make sports a bit harder to manage, it does not make sports impossible. (picture source – “Red Riders” are distance cyclists with Type One diabetes!)
- Diabetes makes food a constant struggle: Another session I attended was led by Dr. Stephen Ponder, who shared that the average non-diabetic makes 221 decisions per day related to food (including where to get it, when to eat it, what to eat, how much to eat, how to prepare it, how satiated one feels, etc.). The average person struggling with a weight issue makes 300 food-related decisions per day … and the average Type One diabetic makes even more. Food is important to all of us, and we should all be paying attention to what we put in our bodies and how it impacts our health … but for a Type One diabetic, there is no way of escaping this constant struggle. (picture source – a book by Kerri Sparling, another conference speaker whose session I also attended and loved)
- Diabetes stinks, but the community is great. I always think about my sister and how strong and inspiring she is for handling her diabetes so courageously and steadfastly. I know how hard it is, day in and day out, and she makes it look easy, covering the pain, struggle, and agony. Despite this, though, diabetes has connected her with a lot of wonderful organizations and people, and I’m so grateful that I got to see some of that amazing community in action this weekend. People were constantly encouraging one another, sharing their experiences, and exchanging information. One of my favorite displays of the supportive community was this board, which allowed conference attendees to write a sticker showing why they were visiting the conference.
So tell me in the comments … Do you know anyone with Type One diabetes? Did you learn anything from this post? What is one cause that you are passionate about?
Dense question, but do transplants work to cure type 1?
That is a dense question, and there’s not a simple answer. Do transplants “work”? Technically yes, meaning that in many people a transplanted pancreas will produce insulin (although there is a high probability that it won’t work also). Even higher is the likelihood of organ rejection, so transplant patients have to be on loads of drugs to prevent this. There’s such a high likelihood of complications that they really don’t recommend it for “normal” Type 1 patients. However, they’re working on solutions like encapsulated beta cells that could produce and secrete insulin, but are protected from the body attacking foreign cells by a capsule. Kind of hard to explain in a comment response, but just know that it’s progress, and we hope to see it in the future!
Very interesting article, thank you for sharing!
Thank you for stopping by!
This is an amazing take-away blog post, informative and inspiring!!! It was terrific to meet you and Lindsey there. I love to hear that the whole family is engaged and supports one another in this type one journey! 🙂
Thank you so much, Tanya, and thank you for all that you did to make the conference a success! I’m so glad that my whole family supports Type 1 and my sister as well. It was great to meet you!
What a great sister you are! And glad you shared so much information. Diabetes is not entirely understood by everyone!
I agree, Emma! I still don’t entirely understand diabetes, but I love learning as much as I can!
Cheers for sharing this, Meg- My dad’s side of the family ALL have diabetes (quite common amongst Chinese Malaysians) so it’s something I’m definitely wary of. IT’s what motivates me to keep my diet generally in check 🙂 Cheers again!
I had no idea that diabetes was that common in Chinese Malaysians, Arman! Although I wish that neither of our families had to deal with the constant struggle, I’m glad we’re each getting a bit of additional motivation out of it!
This is seriously amazing Megan! My dad has Type 1 DM and I am always looking to learn more. I actually did pharmacy volunteer work at a couple of children’s summer camps for kids with Type 1 DM, which was one of the best experiences of my life! The community is so strong! I had no idea about this conference, but definitely would love to attend next time. It sounds so empowering and uplifting!
Morganne, they have conferences all over the country – I hope you get to attend one eventually! It would be so great for you between your dad’s history, your volunteer work, and your future work! Good for you for volunteering at kids’ camps!
Thanks for sharing, Megan! One of my students has Type 1, and it’s extra challenging for a teenage girl (as I’m sure your sister can relate to!) since being “different” is always tough at that age. She handles it well, though. It’s nice for me to learn some more about it!
I feel for your student, Cassie! My sister was diagnosed at 15, so she relates to the struggle of wanting to be a teenager and be “free” and “fit in” but having diabetes hold her back. So glad you can learn more about it to support your student!
What a wonderful post! Thanks for sharing your thoughts, take-aways and insights. T1D is a 24/365 disease and so many people do not understand the constant struggle. I’m so pleased that you got so much out of the conference. It was great meeting your sister Lindsey and your parents!
It was wonderful to meet you, too, Cindy! Thank you for all that you did to make the conference a success!
I love many people with Type 1 diabetes, starting with LINDSEY 🙂 I am passing this along to 2 really good friends of mine who both have type 1. One was diagnosed at 12 years old after going into a diabetic coma, and the other as an adult during her 2nd pregnancy. They thought it was gestational diabetes, but it didn’t go away. It is definitely a cause close to my heart too!
Thanks for passing it along, Katie! Have your friends look for other Type One Nation conferences – I have no idea if there is one close to the Springs, but I know they have conferences all over, and I would definitely recommend attending!
Agree. The conference was excellent ( just like the summary you wrote Megan)
FAMILY – HOPE – JDRF efforts – challenges – efforts – TYPE NONE.
Thank you Mom!
Thanks for sharing, it sounds interesting, and I’m sure it’s always great to show support for your sister! I know a lot more about Type 2 Diabetes, and learning about Type 1 in school/clinical was always interesting, but it can get pretty complicated. I’m sure it’s frustrating at times that food is somewhat of a struggle, but it can also be a good thing and make people be more aware of what they are putting in their bodies. One cause I’m really passionate about (especially getting info out there & dispelling myths) is around eating disorders. So many people don’t really understand them and end up being harmful vs helpful.
I think saying that it’s somewhat of a struggle is an understatement – Type 1 diabetics can never “just eat” or “listen to their bodies,” they have to count carbs and give insulin for every single thing they put into their bodies! I agree with your thoughts on how people react to eating disorders – saying things like “oh, you look so thin” or even “oh, you look great” can be so harmful, although I know people have the best intentions!
Thanks for posting this sis! I sure am lucky to have such a supportive sister who’s there for me every step of the way. Thanks for joining for the conference and I love your summary….really hit the high points and exciting developments on the horizon. <3
Thank you, sis! You’re doing great and I can’t wait for all the future developments that will make living with diabetes easier on you!
Thanks so much for sharing – I have a passing knowledge, so I knew most of the stuff to an extent, ut the risk factors I was definitely not aware of! I don’t have anyone directly in my family (one of Lisa’s grandmothers was diabetic), so I haven’t felt the impact, but I have had a few good friends with it through the years and know it is a very difficult thing to have to deal with – like you say, it doesn’t STOP you … but it changes your path through pretty much every day!
So glad you haven’t directly felt the impact of Type 1, Michael!! Thanks for the considerate comments.
Thanks for sitting in my session at TypeOneNation, and it’s great to hear that you took away so much from the conference!
Thanks so much for all your inspiration, Kerri, and for stopping by! Keep up the wonderful work you are doing!