– Teens and young adults who have grown up with Type 1 diabetes are useful resources, both for younger people with diabetes and their parents.
– Adults living with Type 1 diabetes need different sorts of support networks than do children and teens living with Type 1 diabetes, or the parents of those children.
– Parents of adults living with Type 1 diabetes could probably use their own support networks (“I never hear from ‘X’ and am always afraid *something’s* going to happen”); they could also benefit from being resources for parents of today’s children and teens with diabetes.

And then there’s the other big issue with research: research aimed at preventing or arresting the T1-inducing autoimmune cascade is not going to help children and adults who have been living for years, or even decades, with zero insulin production and no living beta cells. There’s a good argument for skewing research towards the regrowth of beta cells or beta cell function in combination with restoration of insulin-regulatory function and arrestation/cessation of the autoimmune cascade. There’s also a good argument for combining forces with the research arms of other autoimmune-disease-research foundations to increase the number, depth, and funding levels of autoimmune-disease research (and cure efforts) in general.

Anyone who I told I was diabetic assumed I was type 2 (I’ve even had doctors assume I was T2) so all the media myths were applied to me (ie it was all my fault, I ate too much sugar, etc). I certainly hope that this new focus on adult T1′s can result in more education of people not only thru the media, but in it

Scott Strange

I think JDRF has to juggle a number of issues. First, while kids with type 1 are great lobbyists, once those kids grow up, their diabetes doesn’t disappear, and they are (too often) thrown into a world that revolves largely around adults with type 2 diabetes. On the other hand, I think JDRF has to juggle a number of issues, and it isn’t easy.

First, while kids with type 1 are great lobbyists, once those kids grow up, their diabetes doesn’t disappear, and they are (too often) thrown into a world that revolves largely around adults with type 2 diabetes. Of course, keeping those families involved with the organization means that JDRF needs to add focus to include ADULTS with type 1, including the different challenges that this group faces. This is a great first step, but perhaps the best thing JDRF can do is to connect with adults in a new way. There are now several hundred adults with type 1 who blog, and social media outlets are a much better venue to connect people who are geographically diverse. Putting all the pieces together (for example, JDRF New England has a fantastic blog featuring videos and presentations from research updates) is an area JDRF National can use some assistance! We’re here with plenty of ideas, BTW!

Thank you so much for thinking of us old people! I was diagnosed later in life (at 25) and have been living with type 1 diabetes for 17 years now (feel free to do the math). I admit that “Juvenile Diabetes” can be confusing. After all, I was diagnosed as a young adult and “juveniles” do grow up. 50% of people with type 1 diabetes are adults? I can honestly say that I had no idea of that number. But now I feel less alone.

You are right that the name can be misleading. When I did my initial search for information I was perplexed and found myself saying right out loud “Hey, some of us are adults!” But, at the same time, these children tug our heart strings. Daily finger pricks, insulin shots and infusion sets, sluggish highs and trembling lows, relentless maintenance and constant worry – these are my own struggles, just to stay alive. It breaks my heart to think of young children wrestling with this condition, not understanding why they are hurting. So, to change the name from “Juvenile Diabetes” to something else might not serve the #1 goal of JDRF which is to raise funds for a cure. However, there is definitely a need to make us adults feel more welcome.

Dealing with Type 1 Diabetes as an adult can feel extremely lonely. The condition is totally ruthless and requires unwavering attention. As much as they try, family and friends might have a hard time comprehending the situation. Therefore, coping with type 1 diabetes as an adult can lead to depression and alcohol abuse, just to name a few side issues. I try to “forget” about it in between glucose tests and wondering what the sandwich I am about to put in my mouth will do to me. However, it is almost impossible to stop thinking about it. If you do, your body will surely suffer.

Sadly, I do not know any other adults to commiserate with. Perhaps this is due to my own lack of outreach through my early years. But, now that I am older, and now that you mention it, I would love to meet the 100 other adults you reference in your post. It would mean so much to me to share stories and maybe even laugh. After all, misery loves company and laughter is the best medicine. I mean that wholeheartedly – I see my blood glucose levels dip when I am happy and laughing! I encourage JDRF Bay Area to focus on outreach to adults with type 1 diabetes. You might call it JDRF’s Grown-up Table, or something like that.

My other concern is for the parents. As you mentioned, JDRF was founded almost 40 years ago by terrified yet diligent parents of young children diagnosed with this disease. Personally knowing what I know about diabetes, I can only imagine how difficult it is for a parent to face this with their child. It would bring them some comfort to be introduced to adults living with Type 1 Diabetes and to know that their children do have a future. They will grow up to become accomplished men and women who will have the ability to fulfill their dreams.

Thank you again Greg, for bringing this issue to light. JDRF deserves much applause for raising funds and awareness that lead to the advances in treatments that make living with type 1diabetes more tolerable. Hope for a cure is definitely in our future due to the efforts of your extraordinary organization. As an adult who lives with this disease every day, I am very grateful for your insight and dedication to the cause. I don’t mind calling it “Juvenile Diabetes Research Foundation” if it means that the tremendous accomplishments and support will continue as they have been.

Sincerely,

Shelly Jensen

Thanks!

My experience with my local chapter hasn’t been as bad as rainbow’s who commented above, but it wasn’t a whole lot better either. It was alienating, disheartening, and just emphasized how alone I was. Thankfully, I’ve found support online, but what a difference it would make to see my local chapter finally cater to us the way they cater to children and parents.

Coincidentally, later this week, I’ll be posting about some recent interaction I’ve had with my chapter that includes going to an Outreach event tonight.