Thursday, November 24, 2011

Interesting Resources

Even if you don't know much about diabetes, chances are you've heard of two diabetes organizations: The American Diabetes Association (ADA) and JDRF. And you probably know how to google. This is a rundown of some resources I think you ought to know about.

I don't think the JDRF is much of a resource, but it does have a penpal service for kids and if you want to fundraise for them, it'll let you. In some areas it provides kits and connections for the newly diagnosed. Website:

The ADA, American Diabetes Association, has the website, which tells you what a big name they are. They have multiple interesting publications, most prominently the Diabetes Forcast (intended for diabetics and our families). They publish guidelines on diabetes care (such as how often your A1c should be checked) and diagnosis that are followed by most of the world, and that influence your insurance company. They also run diabetes camps, fundraising shindigs, expos, and support groups.

Children With Diabetes,, was founded by a parent of a kid with diabetes, dx at age 2 and now older than I am (well, I guess she was older than me all along). It was bought and is owned by Johnson and Johnson (maker of bandaids, among other things). CWD has newsletter, email lists, chats, a forum, surveys, and an extensive website. Unfortunately, a lot of what's on there, particularly products, are seriously out of date. The website is type 1 focused and is intended especially for parents but has been more open in recent years to adults with type 1 diabetes. CWD has various educational seminars and conferences; the biggest one is the Friends For Life conference that happens annually in Florida. is currently the largest social networking site for diabetics and SOFFAs (significant others friends family and allies). It offers some very minor other services. You can find me on there as JonahD.

If you are uninsured, it is worth knowing about programs that will provide you with free insulin, such as Lilly Cares(which will provide humalog, nph, regular and glucagon for free if you are uninsured and not making too much money) and Novo Nordisk's Patient Assistance Program, which will cover Novolog, NPH, Regular, Levemir, Glucagen, and metformin. Sanofi Aventis also has a Patient Assistance Program that covers Apidra and Lantus. These programs all require you to have a doctor who prescribes the medications and is willing to have your medications shipped to xem, and then you pick them up for free. They have different levels of poverty requirements.

The National Institute of Diabetes and Digestive and Kidney disease has a diabetes clearinghouse website. It is most interesting for its statistics. Whoever writes the website has a dramatic writing style that grates on me.

If you are at all interested in the idea of being in a clinical trial, or if you simply want to know what's going on in your area, you should know about All clinical trials in the US are required to post here,and some studies being conducted elsewhere are also posted here. However, you shouldn't have your hopes too high when looking for a study. At the moment, there are 279 trials related to type 1 diabetes and many more related to other diabetes posted on the site that are currently looking for volunteers or will be looking soon. The search brings up studies on complications, treatments, prevention of development of diabetes, prevention of development of complications, extension of the honeymoon, and more.
Although there are other websites with clinical trials, and others with non-clinical trials, this is the most complete site for trials that have a real chance of accomplishing anything.
I am eligible for one study in my area- I am eligible for an islet cell transplant. A lot of transplant related stuff comes up in my search- is how I know that they're doing bone marrow transplants on recently diagnosed (less than five months) diabetics at my hospital.
You can also find study results of many trials- if you want to see what Exubera did to A1c or body weight or anything like that, you can find it on this website.

Pubmed is my favorite place to just browse journal articles about diabetes (and everything else). Pubmed provides a listing of most medical articles published. If you are looking for very specific information, it may be hard to find, and some things will only let you see a title. But that doesn't mean it's not worth looking through. If you spend much time reading there, you'll learn a lot. I suggest sometime looking at the very earliest things published on a topic- that often provides more basic information.

Speaking of places you'll learn a lot, I've always been a library fan (I have been a library volunteer for more than half of my life). Books about diabetes are a real mixed bag, unfortunately. The library of congress areas for diabetes are RC660 to 662 (diabetes) and RJ420.D5 (pediatric diabetes). You will also find books about diabetes in other parts of the library.

Hopefully, your doctor and CDE are good resources too. And you can make an appointment to talk to a diabetes educator or a nutritionist who might have something to teach you if you want.

Online websites may allow you to buy diabetes supplies cheaper than elsewhere; at least they let you compare prices. Your insurance company's website should be familiar to you and probably lets you look at the formulary and compare prices of drugs (if slowly and arduously). You may need to create an account to do this.

There are a wide variety of interesting diabetes blogs out there. I am not going to make a list (at least not today). Fortunately, lots of bloggers make their own lists of diabetes blogs they like. Here is Kerri's list.

Happy hunting.

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