As an adult with Type 1, are you feeling displaced?


#1

I don’t know about you guys, but I feel like we don’t really have a home (other than here on the net).

Please see http://www.diabetesmine.com/2007/11/feeling-displac.html for a discussion about where we fall between the ADA and JDRF. Where?!


#2

I am now an adult with Type 1. Yes it’s hard for anyone to understand an adult getting Type 1 as an adult til I got on this site and found out that yes it does happen! Don’t feel so miss placed. Your here and we won’t let you feel like that! Another thing that is hard for ppl to understand is that if we took it as a child we DO grow up and Yes we’re still Type 1’s!


#3

Hello! Amy, My brother was dx at 24 months old as type 1 juvenile diabetic. And then me when i was 25 years old . People look at me and say oh you have type 2 beacause your not a kid. you must take pill form. I try to explain it does not matter how old you are at dx.If you ever wanna chat let me know? Take Care and your not alone. Melissa


#4

As an adult child with diabetes, it is difficult to find provider that understand our struggle. It is also hard to deal with providers who think they know more about my diabetes than I do. That is support networks like this come and are an invaluable source of information and motivation.


#5

If we had a place to go, we might call it “LADA Land.” Hey, I know! Let’s build it ourselves!

We could have the “Interactive Pancreas Ride” and the “Blood Sugar Roller Coaster” and the “Hypoglycemia Parachute” or a giant water ride in boats shaped like syringes . . .

Terry


#6

LOL!! Terry, I LOVE the names of your theme park rides!


#7

If you build it… they will come!


#8

When I registered to participate in the JDRF “Walk for the Cure” I took a look at some of the information on their web site. I admit to getting more than a little pissed off. Phrases like “the current life expectancy of a child with type 1 diabetes is shortened by 7-10 years” had me screaming “what the f**k happens when they turn 18?” Unfortunately the JDRF is “the only major type 1 diabetes organization focused exclusively on research”. I guess you stick a cute looking kid in an ad campaign with and everyone wants to help while the news media spreads the myth that adults with diabetes did it to themselves by living an unhealthy lifestyle.


#9

How about the “We know more about your disease than you do” lecture series.


#10

I totally know what you mean… JDRF definitely emphasizes children (and always has) more than adults with T1. And I also find myself frustrated at the crap that the media spreads (here is a recent blog post with an example of this).
I will say, though, that I think JDRF is trying to make more of an effort to reach out to T1 adults. In the most recent issue of “Countdown” that I got, they included an article about this year’s annual JDRF conference in St. Louis. The article said, “A call to action among adults with type 1 diabetes was a focus of the event, a theme that embodied by conference co-chairs Meg Burcke and Chris Goddard, both in their 20s and living with diabetes, who are actively engaging members of their generation to advocate for a cure.” It sort of begs the question, what about T1s who are in their 30s, 40s, 50s, etc., but, hey, maybe it’s a start.
At least us T1 adults have the OC. :slight_smile:


#11

It’s really sad that they think after we reach 18 we’re cured but I have found that alot of ppl seem to come to think that and NOBODY gets it except if your very young or get type 2 after you’ve eaten too much and gained weight. Like I’ve said before when you get it as a child it’s a lifetime deal! I guess we’re suppost to die from it are something! They really tick me off!!! To me it’s really surpiising that the JDRF don’t relize this!!! Maybe they do but use the kids to raise the money?


#12

I feel left out in the cold sometimes, you folks say. Again, before insulin, we wouldn’t have that problem. The JDRF certainly should see us adult types 1 as a resource (certainly a financial one) that they don’t tap into the way they could. They are missing the boat with us in many ways. Parents would like to see the children cured of it. Thanks to research in the past, it is very likely that those kids, cured or not, will grow into adults.

I know that I would not make much of a poster boy for the JDRF. The type 1 kids do that much better than I can.

I let my subscription to the ADA Forecast drop this year. Except the exceptional legal work they perform in discrimination against those with diabetes, I don’t see them as really much of a resource for me.


#13

The question is: What do we do about it? I think some of the big names in the Diabetes OC should get together and try to start an organization or something! I know the idea of a conference has been discussed, especially by Allison. I would love to see this. I think that it is something that would benefit us all. I also think we should all send letters to the JDRF and let them know that we feel left out.
I participated for the first time this year in a JDRF walk, but I felt like there were nothing but children there. Children and their families. I was there with my mom and sister, but I don’t think I met another Type 1 adult. It’s depressing, really.


#14

LADA Land…we could have signs at all the restaurants…"Are you allowed to eat that?"
How about a carnival type booth where one tries their luck at shooting Wilford Brimley and Haley Berry.


#15

I personally lean more towards JDRF, as noted in countdown and other publications. At this year’s conference there were several adults in the audience with Type I, there were also many parents of now adult children. It was neat to interact and work on solutions. I think JDRF wants to include adults with Type I, but as someone mentioned cute kids are much easier to sell than someone who is 30, 50, 75… There has been some success with adult meetups in St. Louis and other cities around the country. JDRF is willing to provide the backing, but the actual advocacy has to be done by people like us. Truthfully, ANY type of advocacy is this way.


#16

I was thinking it could a simulation ride such as Epcot Center’s Body Wars would be the best way to break it to someone they had type 1 diabetes, but maybe a more modest (and practical) idea would be producing a video that shows it. I’d like to see a video or DVD produced which shows what happens inside the body when autoimmune type 1 occurs showing the etiology of what happens. The best diabetes video I’ve seen shows both type 1 and type 2 in the same video from the Mayo Clinic:

That video is accurate, but unfortunately, it does nothing to show the process of autoimmune destruction and how the white blood cells in the body actually destroy the cells they are supposed to be protecting. Think about it for a minute, does anyone share this with the people who are diagnosed? They may get a very brief explanation (or they may not), but it would be so much better to depict it, either with special effects or animation (maybe some high-tech computer animation).

I posted something about this on my blog a while back (see http://sstrumello.blogspot.com/2007/02/role-of-media-with-diabetes_… for that posting). Anyone have any connections in Hollywood? Maybe someone with computer animation skills? If so, or if you’re interested in coordinating efforts to try and make it happen, e-mail me.


#17

A conference is still in the works, but there are lots of logistical things we have to deal with (such as getting insurance for the event … yes, you need that to hold a conference at a hotel!). But any ideas or thoughts on what anyone would like to see addressed in the conference, speak up. Nothing has been organized … yet!


#18

I am a parent of a newly dianosed 19 year old. In Canada drinking age is 19. He is having real challenges that are and do affect the family as a whole. Any help as support or ideas for me would be appreciated.
Karen


#19

Karen, I think that there is a Tudiabetes young adults site…maybe there could be some insight there.
Good luck to you. I’d imagine 19 to be a very tough age for a kid to have to deal with diabetes. Also a tough age for a parent to have to deal with a boy, I am told.


#20

It is frustrating being an adult Type 1. As mentioned before, there is still not enough distinction between Type 1 and Type 2. Sometimes I feel it would be better to have a completely different designation. I quit working 5 years ago, shortly after starting to use a pump, because of the challenges of low bs while working in a physical enviroment. It is hard to explain why when people are confused about the types. I appreciate reading the comments by this group.