Wednesday, July 7, 2010

Diabetes v. Diabetes

"Diabetes is the only disease that fights with itself."

Except for Multiple Personality Disorder, which may have exponentially numerous battles with itself...

The comment came Sara Knicks during the Roche Social Media Summit, in a discussion with the American Diabetes Association about how we're all in this together yet it often seems as though this national organization aimed at diabetes seems so very disconnected from our Adult Type 1 community.

It captured a mood of the room at the time: that there is a Type 1 vs. Type 2 vs. Every Other D Type Out There mentality, and that the face of the ADA seemed more focus on the Type 2 "epidemic" than any other variety of diabetes - even the Type 1 it was created to focus on. We were discussing those points but also how the ADA and JDRF seem to often be butting heads on fund-raising efforts and event-planning, seeming competitive and mutually exclusive of each other even though we're all fighting for the same goal - to raise money to stop/cure diabetes. We talked about how the ADA has the color red, while the JDRF has adopted blue as its own color... Unlike breast cancer that has the universal symbol of pink, Diabetes doesn't have its own universal color. This creates an identity crisis, of sorts, which combines with the frequent debates that come up between Type 1s and Type 2s and others about the variations of the disease.

Our friend Chris Stocker over at The Life of a Diabetic, who unfortunately ran into rental car obstacles and couldn't make it, told a story recently that was exactly on point. Basically, his girlfriend wanted to buy him a medical alert bracelet with a color charm, but couldn't decide on whether to get a red or blue one - the ADA color versus the JDRF's blue. Which one is it? This was exactly the point raised at the Roche summit, one that went not only to the identity of diabetes all together but overall touched on topics such as what the face of diabetes looks like depending on the organization asking for your money at a particular time.

Later at the dinner table, we were all discussing how a continuing dialogue is needed on the topic - especially between the ADA and JDRF point. The Wise Wil Dubois posed a question at one point - "Is there some universal fundraising event that could get these two organizations, and others and all of us, on the same page to focus on the larger diabetes message?" I thought this was a stellar question.

In response, I think that an answer may be in what Manny's already been a strong advocate for: World Diabetes Day on Nov. 14. With the little blue circle to represent diabetes universally. To me, that seems like an excellent starting point to bridge the gaps, to merge the colors without stepping on each individual organization's toes. I was really encouraged by the ADA rep at the summit who told us that the group is really making a concerted effort, for the first time that she'd seen, to really communicate with the JDRF leaders on these issues on where they do and don't overlap in goals and daily operations. Maybe, we'll see more collaboration down the road when one of the groups holds an event and the other realizes that it might be better to hold off on their end to not interfere.

Diabetes isn't going to have a universally known "pink" color behind the cause, but hopefully before long we'll have more of an identity so that an internal identity battle isn't being waged and sometimes taking away from what our fellow diabetics are doing. We're all in this together, whether we support the ADA or JDRF.

Now, it's just a matter of figuring out what I'll be doing for WDD later this year, and how specifically I can help further that working-together dialogue between our local diabetes-related charities. More to come on that as the year progresses! In the meantime, I leave you to ponder how your own ADA and JDRF affiliates have butted heads and how you might work to bridge any gap that exists on whatever level locally from your own corner booth.

7 comments:

Saffy said...

Over in a tiny little corner of the world we have the same situation with a Diabetes Organization focused on 'the masses' i.e. Type 2 and a whole lot of disconnect for adult T1s. To be fair, I totally understand why they're focused on the T2s because they are the majority. I suggested recently that I'd rather belong to the Diabetes Youth group because I feel that I have more in common with them - despite the significant age gap. Sounds like it's a common opinion, but not necessarily ideal. As for changing that perhaps in little places like where I live there needs to be more joint action between a few nations' diabetes societies so that the number of adult non T2s is significant enough to be able to act? Just a thought. As for color? Definitely an identity crisis. Blue seems good - hopefully it can be picked up as a universal choice.

Alan said...

We have the same situation here in the UK Mike, between Diabetes UK and JDRF - they are both broadly supportive of different stereotypes. DUK is focussed on obesity and Type 2, and the 'Juvenile' in JDRF instantly associates it with under-20s. At age 49 at my T1 diagnosis, I'm hardly juvenile and many, many others match my situation - often being misdiagnosed purely because of age. Furthrmore, though the message of DUK is avoid obesity, there are something like 20% of T2 not overweight at diagnosis i.e. millions of people worldwide. The public needs a simple message, but the message misleads for a significant minority of people.

Danielle said...

I don't know... I almost think it's better to separate the two. Think of how much misinformation is spread about Type 1, because most of what you hear is about Type 2 so people lump them together. (thinking back the recipe books and "cure diabetes" books I got from people when my daughter was diagnosed) I think more distinction needs to be made between the 2 diseases, despite how much they have in common.

Renata Porter said...

With being an expat living in New Zealand, I find your post pretty odd. Before coming here I wouldn't have thought twice about it. We have DNZ and DYNZ (Diabetes New Zealand and Diabetes New Zealand), but right now they are struggling to reorg to become a force in this country along with the likes of the cancer organization. I think you are on target that they need to join efforts, but after being here...all I can say is that at least ADA and JDRF are major forces in their own right within the US. Something that a lot of other countries wished they had...wished they had even one.

Jim said...

Michael - I could not find a contact email address - so please excuse me for using this comments section. Have you seen Glycosmedia http://www.glycosmedia.com

Jim Young
Editor
jim@glycosmedia.com

Anonymous said...

Just a bit of history, for anyone who might be interested. Prior to 2000 (I cannot find the exact date--but it occurred just before the internet was becoming widely used), a diabetes activist named Dave Groves was advocating the use of the 'awareness' ribbon. A small group chose to go forward with the idea (which, unfortunately, never gained momentum), and at the following link is the history of the ribbon.

http://members.tripod.com/diabetics_world/Gray_Ribbon.htm

--Melody

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