One of the common criticisms of the Juvenile Diabetes Research Foundation is its overwhelming emphasis on children and parents of children with diabetes — with little to no recognition that kids with diabetes, well… grow up. Or that ever-growing numbers of us are being diagnosed with Type 1 diabetes as adults. God knows I’ve been vocal in pestering the JDRF on this issue over the past couple of years.
Slowly, the organization has branched out, including an ‘Adults with Type 1′ section on their website, as well as conducting a year-long Blogger’s Roundtable series that I was a part of.
Last week, JDRF formerly launched a new toolkit for newly diagnosed adults with type 1 diabetes. The description of the toolkit reads: “A diagnosis of type 1 diabetes is somewhat like starting a journey on a new and unfamiliar road. Consider this guide your road map as you go through the various life stages with type 1.” Hmm, a ‘road map’ should be very useful and precise. Let’s see how they did…
The toolkit itself is actually a 50-odd-page PDF document that you receive via email after filling out a form on JDRF’s website (yet another way to get your contact info, though you can opt-out of receiving their mailings if desired).
First thing to note is that while the PDF is filled with pictures of people diagnosed at a variety of ages (childhood through college and beyond), the content is almost completely dedicated to those who are newly diagnosed. It reads as a “welcome to diabetes” toolkit for those with what we affectionately call LADA (Latent Autoimmune Diabetes in Adults) — with explanations of what diabetes is, how to treat it, and definitions for certain medical jargon like “diabetologist.” It also explains about monitoring your blood sugar and wearing an insulin pump. It discusses financial aspects of diabetes, like pharma companies’ assistance programs, but oddly doesn’t mention type 1 assistance programs from more ‘non-traditional’ sources like Insulin for Life or Diabetic Rockstar.
On the same page, it mentions several resources for connecting with adults with type 1 diabetes, including its own social network, Juvenation; “educational seminars from your doctor”; JDRF chapter activities; and the TCOYD series of conferences (which are great, btw!). The Resource section, at the end of the toolkit, also has a lengthy list of places to get additional information, but nearly all of them are from JDRF itself.
While it makes sense for the JDRF to promote their own programs, the fact that there is no mention of blogs or other online social networks does a disservice to the strong, organic online community of people ready and willing to help adults with type 1 diabetes, newly diagnosed or not, IMHO.
When it comes to finding information about recent breakthroughs in treatments and coverage in the media, the toolkit recommends that you visit the JDRF website to get the latest info and also get involved with your local JDRF chapter “because JDRF has a priority to help fix misconceptions.” This is all well and good, but there are other ways to get involved.
The toolkit primarily covers basic life with diabetes issues, like diabetes and your mood (such as diabetes burnout), marriage and relationships, sexual health for men and women, diabetes at work and travel, which are new issues for any adult with diabetes. The information is presented fairly matter-of-factly, reading much like a pamphlet you might receive at a doctor’s office. Unfortunately, most of us don’t receive the kind of attention we need at the doctor’s office, so the toolkit does provide value in addressing all of these “life issues.”
The information is accurate, complete and concise. However, there is no personal touch — lacking even a single quotation from those who have “been there.”
The toolkit is broken down into bite-sized sections, with most topics getting about three paragraphs’ worth of coverage. As noted, it is “easy to digest” and provides answers to important questions, but certainly not comprehensive for the very full lives we lead with diabetes. Therefore, a more inclusive list of diabetes resources would have been in order; most notably missing is mention of anyone from the D-O.C.!
A number of people in the community have expressed excitement that JDRF is finally recognizing adults with diabetes; they think this toolkit would have been useful when they were first diagnosed. All true.
But the bigger question remains whether or not this will make any new JDRF followers from the thus-far disenfranchised adults with type 1, who to date feel they haven’t received adequate attention or representation from the largest national organization dedicated to type 1 diabetes.
My feeling is this: While it is great to see JDRF finally recognizing that type 1 diabetes affects more than just small children, we still have room to grow when it comes to adults feeling fully welcomed and represented.
What say you all?