The Overlooked Demographic

During last weeks DSMA chat the topic of JDRF and their area of focus came up between a few participants.  One person in particular was very bothered by the focus of JDRF on kids and families of kids with Type 1 diabetes.  He, like me, was diagnosed after he was into adulthood and was left feeling very alone and isolated with no real support network.  I can relate 100% with how he felt, because I felt the same way.  My 'local' JDRF chapter covers Utah and Idaho and is based out of Salt Lake City, 350 miles away.  They still facilitate several events in the area and there are some people locally that keep things going with them but they are all parents of Type 1 kids, so that is where the focus is.  The 'local' ADA chapter is in Portland, Oregon, 430 miles away, and covers Oregon, Idaho, and part of Washington.  Since my diagnosis almost 4 years ago the only ADA activity I have seen in the area was the Community Walk fundraiser, which I brought to the area and organized for 2 years before moving on from it.  So I don't know what these organizations are like in other parts of the country, or what is available for adults with Type 1, but in my neck of the woods the effort is focused towards the kids and support for adults is non-existent.  I'll never forget the first diabetes related event I attended here.  It was a Christmas party put on by JDRF and Hodia, the local kids and teens camp.  I walked in not knowing anyone and got asked too many times which of my kids had diabetes.  The answer to which is neither.  I felt like I was intruding and taking part in an event that was meant for kids,  So I can relate to those feelings of isolation.  Even now, outside of the online community, I do not have much interaction with any of people with diabetes.  The few connections I have made, came from my own searching out people and volunteering with other T1D organizations.  And of all the people I've met, even the 30+ at DTreat last year, I can count on one hand how many of them were diagnosed as adults.

I'm not bitter or angry with JDRF for where they focus their efforts.  Because Type 1 was originally thought to only present in kids and it was during that time that JDRF was founded it makes sense that this would be where their primary focus is directed.  Besides, lets face it, you get a lot more support (and dollars) when cute kids are involved.  Nobody notices about the twenty-something guy that is struggling through college trying to balance school, work, and being a pancreas.  But put little Sally out there and show how her diagnosis has effected her whole family, talk about how a 3 year old has to endure multiple shots a day, or the burden the cost of supplies puts on her family.  That sells.  Cute sells.  And if that's what brings in donations that will ultimately benefit every person living with T1 then so be it.  And from what I hear JDRF has done a better job and supporting adults more recently.  And it may well be different depending on your local chapter.

I guess the point I am getting at rambling towards is that adults with Type 1 diabetes, especially those diagnosed as adults, are a sorely overlooked demographic.  I've written posts before talking about what I want to do to change that.  I would love to head up a group that can facilitate meet-ups for T1 adults.  Even better I'd like to include a mentorship program for newly diagnosed adults and their families.  If you think a diagnosis effects a family any less when it's Dad that's diagnoses instead of Junior, you are way wrong.  It's a great goal.  One I feel passionate about.  There is just one problem.  I have no idea how to get there.  I have tried getting involved with some national organizations working towards that goal but have never really gotten anywhere with it.  The closest I got was creating a group through T1DN, who has groups geared in that direction.  It was going great, I got the paperwork filed, got a lot of the materials, and then couldn't get anything else from them.  I wanted to change the name to include the entire area I live in, not just one city and they said great...but it never happened.  Then I stopped getting answers to my emails.  There was no support there for someone trying to get started.  Another dead end.  The answer seems to be building it from the ground up.  Starting with some weekly or monthly meet ups with others Type 1's and let the word spread.  Build it up from there.  And I would love to do that.  But I am such an introvert (and seemingly getting more so by the day), that just gathering a group of strangers and trying to interact and share my vision is a mind boggling thought.  On top of that my work schedule and family schedule make that difficult.  It is so hard to have an idea in your head, to have the passion burning to do something with it, but just not knowing where to go with it, where to start even.  So if any of you have been involved with something similar, I'd love to hear your ideas.