Comments on: JDRF’s New ‘Adults with Type 1 Toolkit’ A Good Start

By: Acting Like an Adult at a Juvenile Event « Typical Type 1

Acting Like an Adult at a Juvenile Event « Typical Type 1 — Wed, 27 Oct 2010 01:23:34 +0000

[...] the night continued, I started to feel more and more of the JDRF alienation that I’ve heard so many adults with Type 1 talk about. At one point, after four or five [...]

By: ChanceOfPregnancy

ChanceOfPregnancy — Mon, 20 Sep 2010 19:04:15 +0000

This kit will benefit so many people. Congratulations

By: Rebecca

Rebecca — Fri, 05 Mar 2010 14:14:30 +0000

For those looking for help transitioning from the world of juvenile type 1 to adult type 1 diabetes DECA (diabetes education and camping association) actually started last year holding weekend long diabetes retreats for young adults. These D-TREAT’s are specifically aimed at 18-25 year olds transitioning from their pediatric care to a world where they have to worry about insurance issues, job issues, drinking, drugs, finding a new primary care provider, etc. I went to the first retreat last year and it was very valuable. They are having two this year, one in MA and one in CA. You can get more info here: http://www.diabetescamps.org/programs.html

By: James Madsen

James Madsen — Wed, 03 Mar 2010 23:41:03 +0000

Awesome post! Thanks so much for creating Adult Type1 kit as it will positively affect so many lives!

James

By: Melitta

Melitta — Sun, 28 Feb 2010 23:47:00 +0000

Overall, I think JDRF’s new ToolKit for Adult Type 1s is very good. There are a few inaccuracies (adult onset Type 1 is actually two to three times more common than childhood onset T1, based on all scientific studies that use the gold standard antibody testing for diagnosis) and most of the pictures are of adults who were diagnosed as children, but it’s a good start! Although this might be a bit overwhelming for someone just diagnosed, there is lots of good information to help someone transition to the new life they face. I am grateful that JDRF is acknowledging us now, in a positive way.

By: Kathy

Kathy — Sun, 28 Feb 2010 05:28:11 +0000

Pretty much what I expected, although I applaud their initial efforts. There is still no connection with the reality of adult t1s who have lived with it since childhood. And I second the comment about the complete omission of the online community. Without you all I would still feel alone!

By: Kim

Kim — Sat, 27 Feb 2010 14:33:18 +0000

I received the Toolkit yesterday. It is a good start. I would still like to see them highlight someone who was older than 21 at diagnosis, and would love to see some mention that while 50% are diagnosed after the age of 18, many are diagnosed in their 30s, 40s, 50s, and beyond. Too many older adults are misdiagnosed as Type 2 simply due to their age and spend months on therapies that do not work before finally being prescribed insulin. I was diagnosed at age 49, fortunately correctly, but had a very hard time finding any information for newly diagnosed middle aged Type 1s, even from the ADA and JDRF.

By: Rachel

Rachel — Sat, 27 Feb 2010 14:22:45 +0000

I’m in Perth, Western Australia and was diagnosed last year when I was 18. I was too old for the children’s hospital and all the fun camps they held so was kind of lost as to where to go for support. I did a lot of research and one of the places I contacted was JDRF. They were really great here and sent me one of the packs mentioned above (all the info and merchandise really helped me because I was newly diagnosed at the time). But I did notice that a lot of their services were geared for young children so I was still needing somewhere for support. In the end, my diabetes educator pushed me to start my own group because there was just nothing out there for people of my age group. So she got me in touch with 2 other guys in a similar situation and we started a group (YWAIT) and judging by the response (we now have 60 members from 18 -~35 y/o’s), there really is a need for support groups/networks out there for adults (newly diagnosed and old timers) to get together, discuss stuff, have fun and just generally socialise. So I definitely hear what you’re all saying and it sounds like it’s a similar situation here in Australia too.

As far as camps for adults go, to celebrate YWAIT’s first birthday we’ve organised a weekend away down south next month! If it’s worth the airfare, you guys are more than welcome to come

By: Stephanie Jewett, RN, MBA

Stephanie Jewett, RN, MBA — Sat, 27 Feb 2010 12:39:13 +0000

Good post – there is a lot of confusion regarding Type 1 and Type 2 – any information and education for everyone is just a plus. I recently posted a blog article regarding Type 2. Stephanie

By: Lauren

Lauren — Sat, 27 Feb 2010 10:45:41 +0000

A classmate of mine asked me why my “juvenile diabetes” didn’t “go away” once I became an adult. I had to explain, while she looked at me skeptically, that I was diagnosed with type 1 in my twenties, and sadly it doesn’t go away. The response: “Then isn’t it type 2?” At that point I remembered why I have given up explaining …

There are a ton of misconceptions out there, which continue to shock me 3 years out from my diagnosis.