Teens and young adults with type 1 diabetes age 16 and older are finally getting some long-overdue recognition and resources from the JDRF - hooray! The organization this week announced a new "toolkit" aimed at supporting young adults newly diagnosed with type 1.
They've already got a "Bag of Hope" for new families of kids with diabetes — something created in the 1990s and complete with all the newbie info one might expect, along with the cute and cuddly Rufus the Bear.
Yet, those of us in the adult D-Community haven't had anything like that... until now.
So what's in the bag?
No Rufus here. Young adults may not get a stuffed animal, but this multi-sponsor kit (Bayer, Medtronic, Novo) has some handy stuff packed into a sling-style backpack with the signature JDRF blue and white coloring:
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- A Bayer Contour Next USB meter
- Prescription discount card from Bayer
- The Adult Type 1 Toolkit, a 64-page booklet that includes some resources about the Diabetes Online Community (DOC)
- Copy of the Calorie King book on counting carbs and nutritional information
- Copy of fellow PWD Mary Tyler Moore's book, Growing Up Again
- An "insulin 101"-style booklet from Novo that has button-push voice activation, and will actually talk to you as it tells you about how insulin works and the benefits of insulin pens
- Information about insulin pumping from Medtronic Diabetes
"What we've heard time and time again is that really, adults walk away from their diagnosis feeling unconnected and alone, and not not really knowing what to do next," says JDRF national outreach director Andrea Hulke. "That's what we are trying to address with this."
To get one of these new bags, PWDs can contact their local JDRF chapter offices.
Hulke said the JDRF held focus groups asking PWDs, healthcare professionals and others about what they'd want to see in this adult bag, and how it would look so that it's not "blatantly promotional."
"I'm very picky about what gets put in there, so that it's not just promotional pieces from the sponsors," she told us. "I want it to be very practical and educational."
Unlike the Bag of Hope, this new adult bag doesn't have a large JDRF logo on the outside but instead has the organization logo included on a strap. Hulke said they'd considered putting in a Frio case of or something to use with insulin, but that created questions about whether insulin and insulin pens needed to be refrigerated all the time, so they left it out. In the future, the JDRF may offer an insulin carrying case or something else of practical use for adult PWDs.
Originally the JDRF was ready to launch this new bag last week, but delayed the announcement, they tell us, because they wanted a little more time to explore including information about the Diabetes Online Community (DOC). How exciting!
Some of us have been encouraging the JDRF (and others) to include DOC resources to the newly-diagnosed for at least a couple of years now. We would love to see those new to our world get resources to help them not only learn the D-Basics, but also to have immediate access to others who "get it" and are ready and willing to connect for sharing stories and support.
Alas, as of now, the only DOC info in this new bag for adults is in the "toolkit" where a few sites are listed under the heading, "Connecting with other people who have type 1 diabetes." That section mentions the JDRF's online Type One Nation site and the Taking Care of Your Diabetes (TCOYD) website that has some connection resources, but that's it. Hardly a full-blown endorsement of -- or even reference to -- the many bloggers and great networking sites that make up the DOC.
Later this year, the JDRF plans to update the pack to include a quick-sheet of DOC resources, Hulke says. It will be a one-page sheet that's easy for folks to tear out of the Toolkit booklet. But it's not yet known if that will include any new or different DOC information -- like explaining the benefits of "peer to peer" support, and how it's kinda like a 24/7 version of diabetes camp that they can turn to any time with questions or just to hear that "you can do this" and there's hope in their new life with diabetes. That can be powerful, as many of us have experiences ourselves! (We hope you're listening, JDRF!).
Embracing the Forgotten: Type 1 Grown-Ups
We think that's incredibly important, especially since this new bag is part of a larger JDRF campaign to recognize adults in the type 1 population. Did you know that grown-ups now make up of 85% of type 1's in this country? And overall, about 15,000 new children and 15,000 new adults are diagnosed with type 1 each year in the U.S. alone. An even number! It hasn't always been that way.
Countless PWDs diagnosed as kids (like me) say they felt "forgotten" by the organization once they hit those older teen years, and people diagnosed as adults generally say they felt left out of what the JDRF was doing (like our own AmyT, who wrote about this issue back in 2007).
When I was young, I always had the option to find connections with other children or teens with diabetes through my local JDRF (back then, it was just the JDF) office. They seemed to care about what was happening with me. But as I got older, that attention faded as I wasn't the same "cute and cuddly" (i.e. Rufus-worthy) kid anymore, so they seemed to lose interest in me. I firmly believe that a large part of my teenage and early 20s rebellion could have been curtailed if there was more of a community, as there is today. Maybe that would have motivated me to take better care of myself...
It's great to see that changing in more recent years as the JDRF has rebranded itself and worked to be more inclusive of the Adult Type 1 Community. Their Adult Toolkit launched in 2010 was the very first resource offered specifically to this population. An expanded version in August 2011 focused on the adults who've been living with type 1 for longer, and in March they released a new toolkit on pregnancy.
Next up, the JDRF plans to focus on the "transitional" phases of the late teens and early 20s, a key time when many PWDs feel "lost" as they transition from the pediatric diabetes world to adult diabetes care and concerns. The JDRF is still evaluating what will be involved in that.
"These tool kits are the first steps for us to start filling in gaps where there's a lack of resources," Hulke told us. "We are evaluating different life stages and what's needed, but we don't want to replicate efforts or work being done by other organizations."
In summary, we think it's great the JDRF is recognizing these newly-diagnosed adults. Offering basics to navigate daily life, and supplying a meter that can be a costly essential, is a nice gesture. But the community support aspect can't be emphasized enough, and it would've been great to see JDRF actually follow through on its idea of including DOC resources to help connect those feeling alone and forgotten during this new scary time.
In other words, we're hoping for more hope in the Bag of Hope, so to speak.