There’s a new “teen with diabetes” on the block.
Yes, the biggest diabetes conference aimed at children and families living with type 1 just turned 13 this past week, and just as for any person with diabetes (PWD), hitting this stage of life is an exciting time with a lot of change in the air.
The annual Friends For Life Conference took place July 9-14 at the Coronado Springs Resort in Orlando, FL, bringing in more than 3,500 people, a 10% increase from last year, including roughly 700 first-time visitors — my wife and I included!
This was the first time I’ve been able to attend FFL, and my wife Suzi and I were thrilled to travel to Orlando for a week not only for the conference, but also to return to the spot where we spent our honeymoon back in late 2005. I’m still wrapping my brain and heart around the whole experience, but to me it felt like diabetes camp on steroids. Being surrounded by thousands of people who “get it” and seeing the smiles and friendships of new and returning kids and adults just makes me grin while sitting here at my home office computer.
So many families, so many good conversations and fun experiences… there’s no way to recap everything and do justice to the entire conference, but luckily the tweet stream using hashtag #CWDFFL13 is still visible, offering a “real-time” glimpse into various perspectives from those attending! We also posted a number of photos over on our Facebook page, so make sure to check those out as well.
As many of you know, this whole thing got rolling in 1995 when Ohio D-Dad Jeff Hitchcock founded the online forum that’s since become the thriving CWD community. His daughter Marissa was diagnosed with type 1 diabetes at age 2, and she’s now in her mid-20s, recently married, and expecting her first child (congrats!). In 2000, Michigan D-Mom Laura Billetdeaux, who’d been a member of the CWD mailing group, invited folks to come with her family to visit Disney World. Five hundred people showed up… and the rest is history, as they say!
There have been 60+ conferences worldwide and they keep adding locations, but the Florida event is certainly the largest and most long-standing in the CWD world. Don’t be deceived by the official “Children With Diabetes” moniker — the conference isn’t just for kids and their families; it’s open to PWDs of all ages. As we’ve noted before, the number of adult PWDs attending the conference continues to rise. An estimated several hundred came out this year, roughly twice as many as the conference saw a few years back.
What We Learned (And Didn’t)
First, the serious stuff: There were sessions on everything from caregiving basics, carb counting tips, to psychosocial sessions and the latest technological advances in the D-world – brought to you by an impressive lineup of recognizable experts. All the presentations and speaker bios, along with reports from each day, can be found on the CWD conference site. One of the big hits was the Bionic Pancreas project presentation by Dr. Ed Damiano, which drew a huge crowd that packed the room and was the talk of the conference. We’ve reported on Damiano’s work a number of times, so the content was pretty familiar to me. But don’t miss Kelly Close’s test drive of the Bionic Pancreas over at diaTribe, where she describes how the system kept her safe from both hypoglycemia and hyperglycemia for a week!
Of course, CWD has been a part of the Johnson & Johnson family since 2008, so I was thinking that many of the speakers (I heard) were affiliated to some degree with JnJ/Animas/LifeScan/OneTouch. But it turns out that only 7 of the total 166 official faculty and staff were affiliated with JnJ – and Jeff Hitchcock tells us that those 7 were involved in FFL before the acquisition — so neutrality in the programming is ensured.
One of the most disappointing sessions to me was about Health Care Reform’s impact on PWDs – which is a hot button issue so I was expecting to learn some important tidbits. All this session did was note that changes are coming in 2014, but at this point there’s really no clear answer as to what effect this will really have (?). The speaker works within JnJ’s regulatory arm and the session had little detail except for the proverbial tips to “know your stuff” and communicate with employers as this information becomes available. Um, ya think? I snapped some photos of the presentation, which can be found over on our Facebook page.
And then there was the FDA “update” — which started off on an interesting note as the speaker told us that due to “budget restraints” the agency couldn’t send the two planned FDA officials; instead, they sent Dr. Helene Clayton-Jeter who said she wasn’t the subject-matter-expert on diabetes. Really, FDA, this is the person you send to a diabetes conference?! Most of the presentation was an overview of the agency’s structure and a recap of its new patient-friendly website, so during the interactive Q&A, some of us grilled her on what the FDA is planning to do about test strip accuracy. Fellow blogger/advocate Christel and I told her about the Strip Safely initiative and chatted with her afterward, even after she tried to “blame the patient” when asking about what can be done about ensuring more accuracy. The cop-out answer of “our hands are tied” wasn’t well-received, and one of the most interesting notes was a Tweet in response that read: “If planes only landed w/in 20% accuracy 95% of the time, would gov’t untie FAA hands?”
While it was an underwhelming session, the speaker at least took down the information and promised to spread word about the Strip Safely initiative. And we took her email down, so she’s now on the list of FDA folks whom we’ll be reaching out to.
I actually really enjoyed hearing and meeting fellow type 1, Dr. Ken Moritsugu, who now chairs the JnJ Diabetes Institute in Milpitas, CA, and formerly served as deputy surgeon general advising the U.S. Surgeon General (!) He pointed out that one of the biggest challenges in medicine is moving from an acute care model to a chronic one, where instead of focusing on patients “being fixed” by doctors, we’re instead advised on staying healthy in partnership relationship with our care team. Ken said that many of the best doctors in the diabetes world still treat our condition like it needs a quick fix, and they get frustrated when we PWDs don’t “comply” with their prescribed advice. That was very valuable insight, I thought, highlighting the need not only for doctors to learn how to practice better, but for us patients to keep educating them about how we need this all to work.
As always, the most powerful sessions for me were the ones that hit on psychosocial issues of living with diabetes and offered inspiration, and it was good to see a few talks focus specifically on the issues that significant others experience in living with diabetes (more on that below).
Meanwhile, plenty of “insider” fun did abound — from “Low stations” with glucose tabs and sweetened juice, beeping D-devices at every turn. Of course, how can you not just glow with pride as you’re surrounded by swarms of the famed “green armbands” worn by all the fellow type 1s?
On Thursday evening, there was the FFL Banquet and Ball that had a prince and princess theme this year. Serving asmaster of ceremonies was D-Dad Tom Karlya, who took on the role as “King of FFL” (pronounced Fiff-el) until the stroke of midnight when he turned back into Tom (ha!). After dinner, this was just a huge party where the kids (and many adults) were dressed up as faux royalty, and there were neon bracelets that everyone could wear out on the dance floor.
The exhibit hall here was unlike anything I’ve experienced before at any other D-conference, as it wasn’t all “rigid and formal” and full of product promotions… Yes, there were products displayed, but this entire conference was designed to be a fun time, and there were skee-ball and video games and the zero-carb sno cones for the families as they browsed around the hall, meeting celebs like Olympic cross-country skier Kris Freeman, former pro football player Kendall Simmons, and so much more!
One of the coolest things I saw was these Altoid-sized tins designed to look like a Tandem t:slim insulin pump, but contained a dozen multi-flavored GlucoLift chewable glucose tabs! I pocketed a few of these myself.
On Community, Sharing, and HCPs
Among the many talks about social media use in the D-Community, one of the most intriguing discussions came during the Partnering for Diabetes Change session on the first day of focus groups. A panel of DOC’ers joined with four health care professionals — Barbara Anderson, Korey Hood, Jeremy Pettus, and Jill Weissberg-Benchell in a session called Social Media & the Monster Under The Bed.
The panel talked about what to share and how cautious we should all be in sharing information online, particularly in the case of kids with diabetes. A main theme was how to get more HCPs to see the value of social media support. Dr. Jill mentioned that some docs are very conservative and still feel that D-Camp or conferences like FFL aren’t “reliable” because the doctors can’t monitor the type of information provided in those venues. Korey and Jeremy noted that maybe having a “stamp of approval” would help sell docs on the value of social media, but Korey cautioned that getting big organizations like the ADA involved might prove fruitless since it would likely take the ADA a decade to validate social media sites. Jeremy insisted that the DOC needs to “be in the clinical repertoire,” and Dr. Barbara said that only time will bring more HCPs into the view that social media support is valuable.
Fellow T1 advocate Dana Lewis and a colleague also recently published a really great article on the topic of HCPs embracing social media here.
A Diabetes Balancing Act… Even in Orlando
As “magical” as the FFL experience is, though, I think there’s something else that should be shared: you have to be in the right place mentally and emotionally to get the most out of FFL. Even if you’re not talking diabetes non-stop, the fact is that you’re at this event because of diabetes and at times you really can’t escape the feeling that you’re drowning in it.
Yes, the camaraderie is great. And I was very inspired by the whole experience, especially some of the sessions like the one run by fellow PWD Sandy Struss, a motivational speaker who encourages everyone to challenge themselves.
But it was also a little overwhelming, and I was feeling defined by my health at times. There were moments when, despite seeing all the energy and kindred spirits, I felt the need to escape and just step out of the D-Universe for a bit. A diabetes burnout session opened my eyes to this specifically. Led by Korey and Jill, the session was an emotional one that made me realize that even talking diabetes professionally all the time can overwhelm me and make me less apt to focus on my own personal D-management as much as I should. This was reinforced for me during the couples’ and spouses sessions, where I really got to explore how I feel about my own health and how my feelings about my inadequate management often translate into not sharing with my partner as much as I probably should.
Then in my online life, we talk about diabetes constantly, which I think can sometimes make even the minute details of this illness loom large as something more significant than they really are.
There has to be a balance, and I think that’s what this first FFL experience taught me the most.
When we need this community, it’s there, which is a huge comfort. But it’s also OK when we feel the need to step away and focus on the non-D aspects of who we are. There’s a magical “Kingdom of FFL” out there, and when you need it and are ready to embrace it, it can help you move mountains and shake up the world as you continue on the journey of living with diabetes.