8 Responses

  1. StephenS
    StephenS April 17, 2013 at 9:09 am | | Reply

    Yay for this! It WILL be great when DOC resources ARE included in this toolkit. Great to see JDRF making an effort in this area. Anything to help the newly diagnosed, who are often among the most vulnerable.

  2. Ceres
    Ceres April 17, 2013 at 10:29 am | | Reply

    When I was diagnosed I found really usefull the type one guide from american diabetes association, I´l recomend it to anyone, even those who were diagnosed years ago…

  3. Zoe Heineman
    Zoe Heineman April 17, 2013 at 12:10 pm | | Reply

    Thank you for sharing your insights on how to improve this initiative. Regarding DOC, please share your advice and recommendations of how and where PWT1D can find a comprehensive list of bloggers, websites etc. How to learn who belongs to and/or participates in the DSMA and DOC? Where are the best lists, and how to stay up to date? Do you know if Roche is going to host the conference for the DOC again this year?

  4. Kim
    Kim April 17, 2013 at 12:23 pm | | Reply

    Recognizing those diagnosed as older teens and young adults is a very positive step. Moving forward, I hope JDRF will next consider representing or at least acknowledging those of us diagnosed with Type 1 in our 30s, 40s, 50s, and beyond. I was very happy to learn about the new Adult Type 1 Toolkit, but beyond disappointed that of those featured in the booklet, the oldest age at diagnosis was 21. Will those of us diagnosed in middle age and older ever be recognized by JDRF or the ADA?

    1. Tim Steinert
      Tim Steinert April 17, 2013 at 5:31 pm | | Reply

      I feel your disappointment too. My learning curve was steep, but I’m only just now beginning to understand that not all of my problems (like the difficulty of shedding unwanted weight) are caused by diabetes. Some have to do with the fact that I’m middle-aged now. My body doesn’t respond as quickly as it did even eight years ago. It doesn’t recover as quickly from exercise and it needs a more regimented diet (even beyond my diabetic needs).

      They should actually have a class when you hit middle-age!

  5. Nikki
    Nikki April 19, 2013 at 6:58 am | | Reply

    I really wish they had this two years ago for my 13 year old son. He was horrified by the bag with the bear and children’s books in it. He wanted nothing to do with any of it and I eventually gave it away.

  6. Natalie Sera
    Natalie Sera April 19, 2013 at 10:50 am | | Reply

    Just so you know, it’s not only YOUNG adults who are diagnosed with T1. It can be diagnosed at any age, including people in their 80s and 90s. So all the pictures of young people engaging in sports doesn’t tell the whole picture.

    I sent a note to Manny, but might as well make it more public: I think that DA needs to not only have a pamphlet that lists blogs people can access, but also support websites that people can access with questions and concerns. It should be something we could hand out at AADE, and it should be copiable, so that CDEs can distribute it cheaply to newly diagnosed T1s. There are a LOT of resources out there for adult T2s but almost nothing to guide a newly diagnosed T1 to the DOC, which I think is the single most important resource out there.

    I am willing to work on such a pamphlet, although I’m not really a writer — editing and proofreading are my specialties, but I really think we should get this project going, and available for Philly this year.

    I will also post the idea on the DA website.

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