Replies to This Discussion

Permalink Reply by elaine peterson on July 31, 2009 at 9:43am

It is frustrating to me how little T1 is considered in any press. I really, strongly (trying to not say, "hate,") dislike it when I read about diabetes and they are refering to insulin resistance. Brings us back to the old arguement about 2 different diseases. I have pretty much given up on the magazines.....too much talk about eating healthy carbs when I am looking for inspiration to cut back on all carbs.

• ▶ Reply

Permalink Reply by Cosumne Jan on February 27, 2012 at 4:22pm

I am T2 and find the same doo doo about eating "healthy" carbs annoying, and usually inaccurate.

• ▶ Reply

Permalink Reply by Patra Philips on July 31, 2009 at 10:12am

Sounds like there is a market here :-) Anyone was to start a magazine? *grin*

• ▶ Reply

Permalink Reply by Kelly Rawlings on July 31, 2009 at 10:23am

I appreciate your whining! As a type 1 editor of a diabetes magazine edited primarily for people living with type 2, just wanted to let you know I hear you. Like diabetes itself, it's a matter of numbers, especially when it comes to consumer magazines.

The type 1 market is relatively tiny (3-5% of the entire diabetes population--although I personally think not all adult type 1s are properly counted in this figure) that it's not a workable business model to aim a print publication at just the type 1 audience (roughly a million adults in America). One million is an impressive number, but not all will or can afford to buy a publication, not all actually intensively self-manage, etc.

The low overhead of operating an online site is more cost effective. That's where I find a larger quantity of specific type 1 self-management information, such as how to customize multiple basal rates, avoid lows during exercise, and advice on insertion sets and gushers.

Even with type 2, there is LOTS of newly diagnosed and basic info available in print and online, much less specific content related to long-term management. That's because as articles get more specific, there are fewer readers who can relate.

I went to a JDRF fundraiser last year and was a little disgusted that the MC kept going on about "help these little kids with diabetes. They just want to live a normal life. Please, won't you help them?" All the while, this 40-year-old kid was thinking in a very immature way, "What about us adult type 1s?!!!"

As an editor, I have to wrestle with limited page count and the fact that so many people come to the magazine as newly diagnosed PWDs type 2, often with very little to no medical nutrition therapy or even one visit to a diabetes educator. So the basics need to be covered--and revisited. But that doesn't leave much room for other types of articles.

I hear there has been some discussion at JDRF and in the diabetes online community to "remember the adult type 1s!" Although not likely to take place as a magazine, perhaps a big conference (pharma, we'd need your help underwriting the costs) and some sort of online event (so more people could participate) would be possibilities? I'd love it!

Now, back to editing a really great article about whether vitamins and supplements are worth the money for people (type 1 and type 2) living with diabetes!

• ▶ Reply

Permalink Reply by Melitta on July 31, 2009 at 7:50pm

Hi Kelly: Melitta the Science Geek here. Type 1 diabetes is not some tiny percentage of the total diabetes population, nor are we just 1 million people. In information distributed to laypeople, ADA consistently says that Type 2 diabetes represents 90-95% of cases of diabetes in America and that Type 1 diabetes represents 5-10% of all cases of diabetes. However, this is incorrect according to ADA’s own peer-reviewed scientific journals. That 90-95% Type 2 statistic includes people with latent autoimmune diabetes in adults (LADA), and according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), "Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur." Furthermore, the Expert Committee’s definition of Type 1 diabetes by the clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) According to Irl Hirsch M.D., member of the Expert Committee, “The term latent autoimmune diabetes of adults (LADA) as originally described represents perhaps as many as 10 to 20% of adult-onset patients with diabetes.” Doing the math, Type 1 diabetes represents about 20% of all people with diabetes. Not trivial at all. John Walsh, author of "Pumping Insulin", says that classical onset Type 1 diabetes represents 5 to 10% of all cases of diabetes and adult onset Type 1 diabetes represents 10 to 15% of call cases of diabetes. In the landmark United Kingdom Prospective Diabetes Study (UKPDS) of Type 2 diabetes, 10% of the people that supposedly had Type 2 had ICA and/or anti-GAD antibodies, and clearly had Type 1 diabetes (Zimmet et. al., 1999). A new book, Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27). Whew! Enough stats for now.

• ▶ Reply

Permalink Reply by Kelly Rawlings on August 1, 2009 at 9:29am

Thanks for the data!

I agree that adult type 1s aren't properly counted. But we still don't have a good source for a number that policymakers, for example, will pay attention to, Let alone corporate investors!

No matter the real number, the type 1 audience is still quite, quite small for profit-making companies (those who aren't in the never-ending business of selling test strips or meds, for example).

In the world of health magazine publishing (and publishing is an industry that's not doing so well), an audience is counted by the number of people who acknowledge they have the condition (or work in the health field or care for someone with the condition), who read, and who have the ability to purchase magazines in the country of publication. So even at, say, 3 million, the adult type 1 US audience is limited.

But if print publishing isn't cost-effective, there are other ways to reach people. Online, for one.

I've read often here (and experienced myself) how frustrating it is to attend diabetes self-management training courses or workshops and find then tailored to type 2. So definitley I applaud everyone who is working with non-profits and advocacy groups and simply by speaking up on their own to ensure that type 1s are able to have a voice, be heard, and receive support!

• ▶ Reply

Permalink Reply by Elizabeth on February 29, 2012 at 8:55am

But here's the thing — these training courses and workshops tailored to type 2 could benefit from some of the information that is routinely handed out to T1s. I have a number of T2 friends who said that just hearing me talk about some of the information I got to care for my T1 son really helped them to understand better WHY they had to do some of the things they were told to do. At least in the (admittedly limited) experiences of my acquaintances, T2s are not being taught the ins and outs of insulin response and how it interacts with diet, exercise, stress, combinations of nutrients, sleep, and so forth. They're given small tidbits, whereas T1s are given the full-course meal, if you'll excuse the food related metaphor (I think my subconscious wants me to go have lunch). Yes, there are different ways to manage different problems, but there are also certain strategies in common that all of the above could benefit from learning about. And that's one reason I find it frustrating that all the focus is on T2s and the T1s are thrown an occasional scrap.

• ▶ Reply

Permalink Reply by Kimberly on July 31, 2009 at 10:27am

I think that all the magazine stuff is entirely out of date, anyway, so I don't really care anymore. I've found that online communities like TuDiabetes and others are the best way to get up-to-date info and to get suggestions on how to do new things with the pump and how to analyze CGM data. It seems like Type 1 makes up the majority of online diabetes communities, anyway. I checked out the AADE conference schedule, and it is kind of scary how not-current and Type-2 related all of those classes/presentations look to be. So I figure if our CDEs aren't getting enough timely and Type-1 info, how can we expect the mags to do it better and earlier?

• ▶ Reply

Permalink Reply by Scott on July 31, 2009 at 10:34am

That JDRF type of thing is more frustrating to me than the magazine thing. When I was a child and seeing the children in the ads, it was a little heartening knowing that at least someone was working on something for children. But the minute I became an adult, it was like, just give us your money and step aside please, we want to help these children. Disgusted with the whole thing.

• ▶ Reply

Permalink Reply by Marps on July 31, 2009 at 10:42am

I agree. The only magazine I can actually stomach (without getting pissed off) is Diabetic Living magazine. I've also found Diabetes Health to be a good one- but they both only cover about 10 of the 60 pages with PWD 1. It's still more coverage than the other magazines which only print maybe one article per issue about T1.

I understand it's not cost effective to post articles to the small minority that is T1D, so I've just learned to turn a blind eye toward it and focus on getting myself healthy through online forums and discussions. I've pretty much given up the battle against the mags- I mean it's not ENTIRELY their fault. Even the media/ news/ movies portray T1D to be nothing while T2D is EVERYWHERE. I cringe when a diabetes commercial comes on TV because almost NEVER does it pertain to me. It's like they're MOCKING us. haha. It's really angering... but... oh well.

I started my own site: www.FightingTheUnseen.com
and I wrote a fiction love story about T1D "Wretched (this is my sorry)" instead. (through Amazon)

I'm sticking it to the "man". haha

• ▶ Reply

Permalink Reply by Kendra Hillman on July 31, 2009 at 11:15am

I agree. Last year I was in the hospital for DKA. After that, I decided to go to a diabetes educator. She was wonderful 1 on 1. She really taught me a lot. I also chose to attend a diabetes education class that was taught by her. I was warned ahead of time that the class was aimed toward type 2's and that she would keep in mind that I was there with type 1 and adjust some of her class to fit my needs. She did do this, but I was the only type 1 in the class. It was not all the beneficial to me, but I did learn a little. I think people forget that us Type 1's even exist in the diabetes world.

• ▶ Reply

Permalink Reply by Terry Keelan on July 31, 2009 at 11:46am

You said it, we're a small demographic.

I haven't found anything specific to Type I's, but I'm not looking for the same data you are in terms of research and development. I'm mostly looking to read about other people's experience and to get a sense of connection. Most of my resources are on-line - I have an extensive "Diabetes" bookmark list. I get more from the blogosphere than from magazines. And the ads are less intrusive. In relatively close order of preference my resources are:

1. Here (tudiabetes)
2. Diabetes Mine
3. Six Until Me
4. Diatribe

There are also some diabetic athlete sites I frequent

Diabetes Exercise and Sports Association (http://www.diabetes-exercise.org/)
Running Ahead's Diabetic Runner's forum (http://www.runningahead.com/groups/diabetic_runners/Forum) where I learned about tudiabetes

and various Yahoo and Google groups.

• ▶ Reply

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page