To be honest, Diabetes Camp was not a magical experience for me growing up. When I was diagnosed back in 1984 and went to camp as a seven-year-old for the first time a couple summers later, my experience was clouded by homesickness and a mass mosquito attack that led to my never wanting to return.
Sure, this was the place I learned how to inject insulin on my own for the first time. Not only in my leg and stomach while sitting on a tree stump, but one-handed injections into my arm all by myself with the help of the tree trunk. That's a skill that carried over to the rest of my diabetes life. But overall, that's the one good memory I have from the T1D camp experience growing up.
That's why it may seem odd that in my adult years, I've become such a fan and proponent of D-Camps. It's fascinating -- even to me -- that this "uncamper" could be converted so dramatically.
Several years ago, I sat on the governing board for a local diabetes camp in Central Indiana, and I loved being a part of that. I could palpably feel the difference these camps were making in families' lives. And just recently in January 2019 (my newest disclosure and plug), I have joined the board of directors for the Diabetes Education and Camping Association (DECA), a nonprofit that raises awareness, shares resources and professional development tools, and advocates on camp-related issues for diabetes camps in the U.S. and internationally.
This is a new hat for me in many ways, and since I have come to truly appreciate D-Camps, I am proud to wear it and eager to learn more about this whole diabetes camping world.
It also happens to coincide with a big year in D-Camping, in which the American Diabetes Association (ADA) is marking the 70th anniversary of operating its many D-camps across the country; and camps everywhere are grappling with a plethora of modern issues, from diabetes technology use, inclusiveness and diversity, the changing landscape of fundraising, and the huge expansion of international diabetes camps.
Before we dig into some of the issues impacting D-Camps, let's address the obvious question: How did I get converted to a diabetes camp fan?
It was the Diabetes Online Community (DOC) that did it. And maybe adulthood perspective, too.
A Changing Perspective on Diabetes Kids' Camps
As mentioned, that initial D-Camp experience as a kid wasn't a good one. Diagnosed at age 5, I didn't know anyone else with T1D (except my mom, who was dx'd herself at age 5 decades earlier). She wasn't an outside camp person, and resisted my doctor's initial push to get me to camp right away because I was so young. As an only child, when I finally did go to camp at age 7 in 1986, I wasn't at all happy to leave home and be away from my family.
I was pretty much forced to attend Camp Midicha, an ADA-run camp in mid-Michigan. Anyone who knows my disdain for mosquitoes and bug bites can guess where this is going...
For whatever reason, the mosquitoes there ate me alive. They focused on my lower leg behind the knee, and a few bites led to more on top of others. In the end, that part of my 7-year-old leg puffed up to the size of a softball making it nearly impossible to walk or run around. As you might imagine, it was tough for me to look beyond that and ever want to return to Mosquito Ground Zero in the middle of the Michigan woods.
There you have it. A childhood "trauma" that sticks with you for life...
Roughly a decade later as a teenager, I was also "encouraged" (aka forced) by my pediatric endo to attend the same diabetes camp, because of a higher A1C and lack of focus on D-management. But being rebellious and not wanting to focus on diabetes at all, this also didn't go over well and certainly didn't open my eyes to peer support as was intended.
Nope, it wasn't until my late 20s and involvement in the DOC that my POV really changed.
I started seeing many fellow D-peeps online sharing their wonderful D-Camp memories, and it made me wonder why my time at camp was so different. I found peer support and friendships in the online community that spilled over into real life, encouraging me to reach out and get involved in my local D-Community.
One day a quick online search led to the discovery of the Diabetes Youth Foundation of Indiana (DYFI), located about a half hour from where I lived in Central Indiana at the time. An email and phone call later, I had connected to the camp director at the time and expressed my interest in learning more and possibly volunteering. The rest, as they say, is history.
Soon, I was helping to organize the DYFI's first-ever teen camp and before long I accepted an offer to join the nonprofit org's board of directors. I stayed in that role until my wife and I moved back to Michigan in 2015, and from there I have been pretty unconnected personally to camps; but I've remained a fan.
That experience opened my eyes to the wonders of D-Camp for so many kids and families, as I saw their faces and heard the heartfelt stories of how much camp touched their lives. I've also continued seeing similar camp stories shared through my work here at DiabetesMine as well as from those in the DOC, who often recount their times growing up and going to camp or being involved as adults.
With that, it was an honor to recently join the DECA leadership board -- to bring my POV to this organization. I'm one of three adult T1 PWDs in the group's leadership, as well as a few D-parents and others intimately involved with diabetes camps or the medical profession. If you haven't heard of DECA before, you're probably not alone. Founded in 1997, it support about 111 dues-paying member camps that amount to 80 different organizations, 425+ camping sessions a year at ~200 sites. Roughly, that translates to 25,000 campers per year that DECA indirectly supports.
My main charge is to help with marketing and communications, amplifying the stories of individual camps and those involved and really to raise the level of conversation as it relates to DECA and D-camps in general.
We had our first in-person board meeting recently in conjunction with our own International Diabetes Camping Conference in Nashville, TN. This annual event is usually tied to the yearly gathering of the American Camp Association, which actually accredits all champs (including D-camps). Many of the 100+ who attended this 22nd DECA conference stay locally to attend the ACA conference, and the speakers are weaved into both programs.
For me, it was about networking and just listening, to learn how I can best help.
Grappling with Technology and A1C Rules
As noted, there have been years between my active involvement in any D-Camp at the board level. Dipping my feet back in, I've learned that D-camps across the country and worldwide are facing some pretty tricky issues -- from navigating new challenges in fundraising, to changing diabetes standards and several issues related to technology and potential risk.
Technology and Remote Monitoring Quandaries
One of the big issues camps face involves families not being able to follow their T1D child's data on CGM or even closed looping during camp, because traditionally the thinking was that kids should "unplug" during their camp time and enjoy the outdoors instead of being distracted by gadgets. Some camps have blanket policies of not allowing smartphones at all, while others over the years have adapted policies related to even allowing CGM tech, requiring receivers, and so on.
In almost all cases, parents have pushed for CGM and phone use to be allowed at D-Camp, and some even go to the lengths of sneaking phones into their kids' bags to ensure they'll have some remote-monitoring access during that time.
At the DECA conference, I heard about camps that have embraced devices, by offering power-outlet lock-boxes for smartphones with CGM apps to charge at night, and trying to assign cabins based on CGM use and overnight charging capabilities. At one Ohio D-Camp, they apparently put each CGM receiver in a clear plastic bag hung on the foot of the bed child's bed at night, and added glow sticks in the bags as a sort of night-light to find the CGM tech in the dark as needed.
"Technology can help relieve burden in general, but it also can be a source of burden. The fact that there are options now to stay connected really does create a dilemma not only for the parents but also for the camp. How much information do we really want to share with the parents...? Not because we don't want to share, but because it deprives the camp of being able work independently with the child. That can interfere with the kid's experience and why they're at camp."
Anhalt says Nejeda follows the practice that many D-Camps follow: encouraging families not to call at the time, not to worry about following glucose remotely, and to trust the medical personal and staff to do their jobs.
"It's a complex question that must be balanced out with many other facets. It seems like a no-brainer (to allow D-tech use)... but it's not that simple. The dilemma we have as a camp in looking at these technologies is, how do we utilize them effectively, and also maintain that sense of freedom and enjoyment for kids?"
Another issue centers on how D-Camps deal with camp counselors and staff members with T1D, and whether they should put policies in place requiring a certain level of personal diabetes management before they're allowed to work at the camp (no kidding). Some camps apparently view higher A1Cs as a danger, because it could mean that those staffers may face their own D-issues and not be able to appropriately care for or advise campers.
The notion of mandating a certain A1C has come up in conversation in online diabetes camp discussions and of course at the recent DECA conference, and while opinions vary, a majority feel that it's not right. In fact, the American Diabetes Association (ADA) has also recently explored this issue and determined it's actual discrimination to police A1C in the context of camp staff employment. Wow!
Raising Awareness on Diabetes Camps
One of the DECA sessions featured folks from ADA that runs so many diabetes camps around the country. As of 2018, ADA actually runs roughly 30% of the DECA membership camps, many of which are ADA-affiliated even if they aren't owned by the org. Some interesting stats from their camps include:
- Average first-time camper age: 10.2
- Roughly 83% of campers have T1D
- 9.2% of campers are siblings or friends of campers with T1D
- Only .3% of campers have type 2
- 7.5% of campers are at risk for T2D
- 25% of campers were diagnosed within the past two years
- 56% of new campers were referred by their physician or diabetes educator
- 27% of first-time campers applied for financial aid
They also mentioned that 75% of those attending ADA diabetes camps this past year are actually on insulin pumps or CGM tech. Given that less than 30% of T1Ds in America actually use CGMs, this begs the question: What are diabetes camps doing to embrace the broader population of PWDs who aren't using or can't afford this latest technology?
Personally, I don't know the answer to that and hope to explore the issue more -- especially in the context of diversity and inclusiveness. There's a whole emerging body of research on this topic, and I'm intrigued to learn more about it.
It's also interesting that D-camps are struggling to raise awareness about what they do, not only on general diabetes 101 education but also the services and programs many offer for kids, teens, and adults within their communities. In fact, D-Camps want the world at large to know they are working to reach beyond just youth to all the adults out there with T1D. We've reported previously on Diabetes Camps for Adults from the Connected in Motion org.
Diabetes camps also rely heavily on resources from D-Industry, and distribute a list of companies showing where camp kids and families can find help if they're unable to access or afford medicine or supplies. That's a big resource DECA offers, and, I'm learning, one of the most frequent requests from member camps to the organization. Along with that, DECA offers professional development resources and "connecting of dots" between camps that is in such high demand.
Overall, my mantra these days is how D-Camp is awesome, and it's such a benefit to the community.
My 7-year-old self may not have agreed, but as a T1D adult it's become crystal clear for me that camp is a place where magic happens. So I'm excited to help raise awareness and do what I can, from my corner of the world, to help diabetes camps in whatever way possible.