I see this terminology all the time, especially JDRF. Maybe after 50+ years of Type 1, I am no longer juvenile and hate to be corralled in that fence.
Yes it is antiquated imo- but it's still used. I believe when they changed the names to type1 / type2 juvenile stopped being used but people still use it and that is probably partly of why I was misdiagnosed, received terrible advice/treatment and almost died. Or was it when they changed it to insulin dependent vs non insulin dependent? I'm not sure. I think JDRF is the main group that still uses it but I have heard other people not associated use it also.
If I recall correctly, the Juvenile Diabetes Research Foundation changed their name to just the acronym, JDRF. When questioned about what it stands for, they say it's just "JDRF," it doesn't stand for anything.
I know it doesn't make sense but many corporations now go by their acronym name only.
Yes, I agree that juvenile is a misnomer since children grow up and most T1Ds are adults.
In our lives it's already gone from "juvenile diabetes" to "insulin dependent diabetes" to "Type 1 diabetes". By now we've long outlived the docs who diagnosed us... but the new young docs will come up will come up with several more new naming schemes for the same thing I'm sure!
I personally have no problem with “juvenile diabetes” since that’s what it was when I was a kid. But there is a risk with so many obsolete names and current categories that diabetes advocacy might get too finely divided to have the critical mass to move forward.
Already there’s folks here who identify fully with “LADA” but do not saddle themselves with “Type 1” and its implications.
I sometimes say that I have "juvenile Type 1 diabetes" when I'm talking to people just so they know that I was diagnosed when I was a kid. Obviously people can tell I'm not a kid anymore. Believe it or not, I often feel like I'm a minority within a minority as someone who has Type 1 and has had diabetes since before I was a teenager.
As mentioned, JDRF is distancing itself from that term:
In addition, we understand that the word “juvenile” is no longer descriptive of the disease or those burdened with it. Today, 85 percent of those with type 1 diabetes in the U.S are adults. We must communicate that JDRF is an organization for ALL ages, and ALL stages of this disease.
The JDRF identity was created with these key considerations in mind. We have dropped the formal name “Juvenile Diabetes Research Foundation” from our identity and will be known simply as JDRF. This better reflects our commitment to work for ALL those with type 1 diabetes.
When I was diagnosed in 1991 the terminology was "insulin dependent diabetes mellitus" so I'm not sure when "juvenile diabetes" was replaced by IDDM. I think "juvenile diabetes" was used back then but I don't remember if the Types were used. I believe IDDM was replaced by "Type 1" in the late '90s.
I think it needs to go away, it's very antiqued and inaccurate ...and has been inaccurate since they figured out what type 1 diabetes is. I usually say I''m a type 1 or insulin dependent . I still get "I didn't know adults could have type 1 diabetes!" Well, kids don't grow out of it...and then there's people like me where we developed type 1 in adulthood. I also get people who act like I'm tortured for having to be insulin dependent, when I rather be that then dead.
It's true - JDRF has tried to "rebrand" but folks won't let them. I was dx'd juvenile and it does not bother me to be called that or whatever. Names will never hurt me. And I act very much like a juvenile so it still fits :)
I disagree with it being inaccurate....it may be for you, but not for all. I was diagnosed at 9 years old. So, I was a juvenile diabetic. But now I am an adult type 1. I could care less what people call it or call me. I would rather focus on taking care of myself and the advances that will get us to advocacy, research and eventually a cure one day.
While yes, the term "juvenile" is antiquated, the JDRF does not discourage it's use. Simply because charities and organizations that raise money "for the kids" get a lot more of people's pocketbooks. It's the fund raising that helps to continue the stereotypes, I'm afraid.
I have a feeling that since JDRF is focused on type 1, it is helpful to their fundraising if type 1 is associated with children. And let's face it, as one of the major funding sources for research into a cure, my thoughts are whatever works.
When I was diagnosed they whispered the term "Sugar Diabetes"...it was kind of like receiving the mark of the beast...:-)
I love that they whispered "sugar diabetes" I wonder is there an "aspartame" diabetes for sugar substitute users? Or a "splenda" diabetes? Jong youput a smile on my face this morning.
I was 10--52 years ago, so was diagnosed while a juvenile. The point for me is that lots of people, who are not juveniles, are diagnosed every day. AND it is type 1 diabetes. I think my problem with it is inaccuracy, as you do not need to be a child to get a T1 diagnosis.
And, I am a word person, so although I also focus on my well being, I still want people to understand I have type 1 diabetes, and not a kid's disease. Lots of folks actually think that--it is something you might outgrow.
When I was diagnosed in 2010, I was told that I had "Type 1 Diabetes, also known as Juvenile Diabetes". Some parents grew up with that terminology and its easier for them to understand what their kid is going through if they can use the words they know. It's definitely a misnomer, but all of us diabetics have to be understanding :)
Understanding for parents of Type 1 children is great, Leah, but since more people are diagnosed Type 1 as adults than as children, I think we are the ones that need understanding! It's good that you were told you had "type 1 diabetes" because you were young enough to look close to what was expected, but many of us were told we had Type 2 diabetes of course, simply because of our age. As long as people continue to use the outdated term "juvenile diabetes" many of us will continue to be misdiagnosed which means we don't get the correct treatment for months, even years, and it can even be life threatening. And since even those diagnosed as young children do grow up, the lack of services for and attention to Type 1 adults is very disheartening.
You said it Zoe! Even something as critical as getting enough test strips is based on the correct Dx. It can take an act of God to get "them" to change the Dx to type 1, once the type 2 Dx is entered on the file. And there are, unfortunately, children developing type 2 because it is in their family, and kids just aren't as active as they used to be etc.
I had T2 misentered into my file when I moved a couple of years ago. Maybe my A1Cs confused them or something. My GP fixed it at my last visit.
I think that JDRF is an "operation" and doesn't want to do the chore to change their name. A lot of their schtick seems to sort of rely on the dewy-eyed kids getting mauled by shots. Which is not entirely correct. I've started hanging out with a local group run by moms of CWD and the kids strike me as being, like I am, extremely tough and intelligent. When I hear them talk about D-stuff, they sound like me.