As part of its expanding commitment to improving the lives of adults who have type 1 diabetes, JDRF has created a new resource called the JDRF Adult Type 1 Toolkit.
Written by people who have type 1 diabetes, the Toolkit is an essential “how-to” guidebook about living with the disease. It offers information and advice on a plethora of topics, such as how to deal with the diagnosis and day-to-day management of diabetes, how to tell friends about the disease, and how to juggle the demands of diabetes at work. It describes how diabetes affects physical and psychological health, relationships, and parenting. It gives tips for approaching things like diet, exercise, travel, and work and explains how to educate others about type 1, especially on what to do in emergency situations.
JDRF hopes the Toolkit can also help to foster a sense of community among type 1 adults, who represent the majority of those living with the disease. Toward that goal, it outlines ways to connect with a network of other type 1 adults and with JDRF’s “expert listeners,” volunteers who give advice and tips for dealing with specific situations that people with diabetes encounter. JDRF developed the Toolkit to address the glaring lack of resources for adults with type 1 diabetes. When children are diagnosed, their parents are often flooded with support and resources to help them care for their child and cope with the disease’s impact on the entire family. Yet when adults are diagnosed, they usually have far fewer resources and often don’t know where to turn for support. The resources for children are often not applicable to adults, who have different needs. Making matters more difficult, adult type 1 diabetes is frequently subject to misinformation and misconceptions that blur the lines between type 1 and type 2, leaving people with the disease feeling isolated and sometimes confused. The Toolkit is one aspect of JDRF’s response to these issues.
JDRF recognizes that as people grow older, their interests, priorities, and needs change. The Toolkit aims to address, identify, and support these evolving concerns. It provides the adult type 1 diabetes community with specific content and tools focused on various life stages, such as the point of diagnosis, relationships and marriage, pregnancy and children, the workplace, and complications. In this way, it underscores JDRF’s determination to help people with diabetes remain as healthy as possible as we work toward finding a cure.
The Adult Type 1 Toolkit is an early step in JDRF’s plans to develop an extensive program to support the needs of adults who have type 1 diabetes. We will be developing additional resources to ensure that adults have the support they need to live well with the disease.
The Toolkit is free and available at any of JDRF’s85 chapters nationwide or at www.jdrf.org/adults.
You know, I am glad that this is finally available. I am of mixed feelings of the JDRF tho, I was diagnosed at age 7 in 1970. Once I became an adult, they no longer seemed interested in me at all… unless they wanted some donations. I hope this attitude is gone
See. Just when you thought nobody was listening, we have marked progress. I’m sure you will sleep better tonight knowing that one can truly make a true difference.
This looks really useful- however as I don’t live in America the registration page won’t work (and its not on the UK version of the site) could somebody email me the pdf? I’m going to contact them to complain as well.
I don’t live in the USA either, but I just entered an address and downloaded it (my parents are in the USA – so I downloaded their address). I agree that they should make it possible to register with an international address since it is only an online document. I will write compaining to them as well.
I just finished reading and found it interesting that
a. they’re recognizing adults
b. if I got this when i was first diagnosed i would have been soooo overwhelmed.
I don’t know about you, but when I was first dx’d (2 years ago) it took me months before I was able to ‘see/comprehend/understand’ what my endo, insulin therapist, dietitian said; or things my husband found for me (like this site, six until me, calorie king software etc) I don’t know if a 50 pg PDF is the right format for someone newly dx’ed which is who they are targeting it to - though there is useful info for the not so newly diagnosed.
This poses an interesting question - If you can remember your state of mind when you were first diagnosed what would you say to yourself?
Thanks everyone for this. I’ve had a read and i think its really useful- I agree Jodi it would have been too much for me at diagnosis as well- but a few weeks in I was trying to read everything I could and probably could have coped by then. Its very america-specific with regards to treatment regimes, funding, BG targets etc which is probably why they’ve restricted it to America only- probably for legal reasons! But I thought the general stuff was good.
I’ve read through this in more detail, and I must say, I am quite impressed. It seems thoughtful, objective and accurate. Not something I would necessarily have expected and certainly not something that I would ever expect from the JDRF, and certainly not from the ADA. I must say, knowing a few type 1s who have been given a short visit from a Dr, told they are a type 1, here are some prescriptions and “good luck.” Such a resource, even if a bit daunting, is important. I have one dear friend who spent literally months totally distraught as her doctor continued to titrate her insulin and berate her, while doing nothing to help her understand diabetes, become educated and come to terms with her situation.
Wow, what a great tool for an adult that is confronted with Diabetes. It was put together very well. I would difinetly suggest it to someone that that needs help finding answers to their questions. Newly diagnosed diabetes is not just about taking shots. It covered many things. Thanks for sharing.
I can say, as a T1, I have experienced this… it’s SUPER frustrating. It’s not only little respect, but very little understanding of just how or why our disease is different. I remember arguing and arguing with the nurses when I had my second baby that I did NOT need to be served a diabetic diet… it was insane what they were telling me, and ultimately I had my husband go get me most of the food I ate while in the hospital. I’m sure I got some kind of nasty note in my chart about being “non-compliant” but there’s no way I was going to eat the stuff they kept trying to give me (which was ironically low fat and SUPER high carb… the carb counts on most of the “diabetic” meals I was brought were like 80-90g, and the amount of food was pathetic).
I had a T1 doctor with my 3rd baby, who basically told the nurses to let me eat whatever I wanted, and to not hassle me about checking my BG at all, that I’d manage myself just fine my own, and told me if I had a problem or needed help with something to call him, not the nurses. He was awesome
My mom and my step mom are both nurses, and even they struggle with the T1 vs T2 thing… they just don’t get it. It may have to do with the types of nursing they each do and their relatively low level of exposure to T1 patients (especially those NOT on the old two shot a day regimen).
I have experienced this so many times and it really irritates me. I work in a hospital and the nurses i work with irritate me because they act like they didnt realize t1 and t2 are different. its all elevated bg to them. I have dealt with t1 since before most of them were nurses or even out of high school. Part of it is because I live in a very rural area and they rarely see a type 1 most of what they get are native american type 2s. but it is still frustrating
I was skeptical, but after reading it I am impressed. This should be required reading for every new T1 adult. I’m not sure if the topic would have fit, but a section on T1 heroes would have been cool. People who conquered Everest, son the Race Across America, etc.
