While many research-and-science-heavy conferences are afoot this time of year, the relatively new Students With Diabetes conference is another animal altogether. It concentrates on age group that’s often overlooked: college students and young adults with diabetes.
Our own Amanda Cedrone had a chance to attend her first-ever SWD conference recently in Florida, and reports back today on what that experience was like.
What’s the first thing that comes to mind when you think of a large group of twenty-somethings partying at a hotel in Tampa, Florida?
The makings of a crazy college beach party might come to mind.
But no, that’s not what the annual Students With Diabetes Conference is all about. Hosted by D-advocate and former Miss America 1999 Nicole Johnson, the conference is about empowering young PWDs (people with diabetes) at a critical stage in their life when diabetes often falls to the back burner.
We’ve talked to Nicole a number of times here at the ‘Mine, and many probably remember that she’s a fellow type 1 herself who was diagnosed back in college in 1993 at age 19 (so this year she’s marking her 20th dia-versary!). Of course, aside from embracing the beauty pageant world, Nicole has since then worked for multiple diabetes advocacy organizations and founded two of her own, Bringing Science Home in 2010 and Students With Diabetes the following year.
Now in its third year, the the three-day event held May 31 to June 2 brought out 120 young adults ranging from 18 to 30. Most were type 1s, though we had a few supportive Type Awesomes mixed in here and there. There was no official theme, but Nicole was very clear about the goal of “empowerment.”
As someone diagnosed as a young child, I’ve lived through that transition period and like many I felt “forgotten” by the likes of the JDRF and other organizations in the past. So, having an organization devoted to this transition time seems invaluable!
It’s interesting to hear how Nicole describes the evolution of SWD and how attendance has exploded in just the first few years she’s been holding it. Technically, the first year they co-hosted the event with the Diabetes Education and Camping Association (DECA) and its DTreat program, so this is really only the second independently-run conference by SWD.
But, the interest has skyrocketed and tripled since last year’s conference — 20 attended in 2011, 40 in 2012, and about 120 most recently(!) Wow! Definitely a sign that there’s a need being tapped by SWD.
This was my first experience attending, and there were seven different seminars scattered over three days. Sessions had a mix of motivational speakers, basic information that young adults with type 1 diabetes should know but may have never been told, a little bit on recent advances in technology (read: Artificial Pancreas), and of course talk about where we’re headed.
A bunch of people (me included!) were live-tweeting during the event using the hashtag #swd2013, so you can revisit those tweets to catch some of what we experienced. But for me, here were some highlights that stand out:
On Friday, we had a chance to hear from keynote speaker Sébastien Sasseville, a general bad-ass diagnosed at age 22 in 2002. Since then, he’s become the first Canadian with type 1 to climb to the top of Mount Everest. It took him two months and he only had limited food, water, and… yes, diabetes supplies. But he did it, wearing his Animas pump!
A fun fact that I learned: glucose meters are only approved for use up to 10,000 feet. Due to the altitude change, readings taken at any altitudes higher are not guaranteed to be accurate. Meanwhile, just the base camp of Mount Everest is 17,000 feet. When he could test, Sébastien would calculate the average of three different readings and hope for the best.
At one point during the trek, when he was dehydrated and couldn’t check his blood sugars because of the altitude, one of Sébastien’s teammates asked him if he wanted to turn back. He refused. On May 25, 2008, he reached the top.
Since then Sébastien has run the Sahara Race – a self-supported, seven day, 250-kilometer (approximately 155 mile) run in the desert. He’s also competed in five Ironman races, and is planning on a 5,000 mile solo run across Canada in 2014.
What an inspiration Sébastien is for anyone living with type 1, and going through these times where you’re wondering what life has in store. Clearly, whatever it is, you can surmount it!
Girls and Guys Talk D
On Saturday we broke up into three groups for different sessions – type 1 girls and guys, and type 3s.
For the guys, word is they chatted about sex and diabetes. There were also some more theoretical topics, like “How would you feel if there was a diabetes cure suddenly discovered tomorrow and a huge part of your identity was gone?” (Interesting question for any of us really, isn’t it?)
The type 3s covered many of the topics you’d expect: what they need to know about diabetes care, what their role is, and they even learned how to administer a glucagon. And probably they talked a lot about just being supportive for their PWDs all around.
My group of gals got the skinny on pregnancy from the folks at the OB/GYN unit of the University of South Florida Health. What we learned wasn’t necessarily new, but Nicole believes that this is the type of information that young adult diabetics need to know and may not be getting from their doctor. Judging from the large number of questions during that session, there’s a lot of interest in this topic. I know we’ve had our share of posts on this topic here at the ‘Mine in the past, and there are other resources in the community like the recent Diabetes Advocates post on pregnancy and diabetes. Plus, the JDRF recently released a “toolkit” on pregnancy and diabetes. See, there’s definitely a need and this is a topic worth talking about!
Embracing Your Inner Advocate
Another great presentation on Saturday came from Tom Boyer, government affairs director at Novo Nordisk. He talked about the importance of diabetes advocacy, and more specifically, the idea of the younger generation taking on the role of advocates. While progress has inarguably been made in diabetes care and research, Tom made it clear that we have a long way to go.
- In the U.S., diabetes saw a 3.4 percent increase in the death rate from 2010 to 2011 – the biggest increase among any chronic disease. Meanwhile, death rates from heart disease, cancer and stroke dropped.
- Federal and state spending on diabetes has lagged.
- As most of us know, diabetes disproportionately affects minorities. If we continue with the current trend, 1 in 2 minority children born today will develop diabetes in their lifetime.
I Spy An Artificial Pancreas (Expert)?
Last but certainly not least, the JDRF’s own artificial pancreas expert Aaron Kowalski gave us an update. He focused on the strategies driving AP — specifically, the idea of a Low Glucose Suspend system, a predictive hypoglycemia system, and a hyper/hypo minimizer system, the subsequent progress that JDRF’s made with the FDA, and where trials stand on each concept.
Aaron talked a little bit about glucose responsive insulin, which is still in pre-clinical development. While he specifically said he has no idea what Merck (which is working on developing the product) is doing, he imagines they are pushing very hard to make it happen due to the obvious profit and benefits that such a product would generate for type 1 and type 2 diabetics.
During his presentation, Aaron briefly mentioned the idea of a single-port sensing and infusion site and that it is possible. I asked him more about it after the presentation, and he told me that while there have been a few trials in Australia, it’s still in early development. According to Aaron, one of the main problems with such a device is that a sensor lasts longer and needs to be changed less frequently than insulin in a reservoir.
Well, here’s to hoping!
For me, the conference was a great experience and I learned a lot of useful information. That being said, this first experience reinforced for me what I hear many people say after attending these diabetes conferences: meeting and talking to fellow PWDs as we share stories about our lives is the most beneficial part. Having never surrounded myself by so many type 1 diabetics at once, I totally agree!
As to the future, Nicole said she plans to continue to grow Students with Diabetes through research, internships, national conferences, products and grassroots efforts. This summer, the group plans to introduce an app, medical identification bracelets, and insulin pump skins as resources for the SWD population. She says the organization also plans to submit three academic articles for publication in diabetes journals in the coming months.
Obviously, Nicole is very excited to see the growth that SWD and her conference have experienced in the first three years, and like her I’m looking forward to seeing how her program expands to meet the important need in this transitional phase of life with diabetes.
Thanks for the wrap-up on the conference, Amanda. Sounds like a great time and we’re very happy to hear that there’s more and more support out there for Students With Diabetes!