Category Archives: Diabetes

D-Blog Day. An open letter to the media.

November 9, 2012 – 3:24 pm

It’s November 9th, and that means it’s D-Blog day. Today, the entire Diabetes Online Community is encouraged to write a post of similar topic on their personal blogs. And today, we’re encouraged to share them with media outlets far and wide. Want to include yours? Write your post and link it here: http://diabetestalkfest.com/blog/?p=507

Our topic today:

Choose a form of Media Outlet to write an open letter to, such as NY Times, CNN, Local/National Newspapers, TV and why it is so important for them to let the world know that diabetes is more than just being overweight and having too much sugar. It is about reporting stories about Type 1 and Type 2 diabetes. Let them know what kind of things you would like them to write about. If there are specific articles or reports they got wrong, let them know about it! Let’s get it right!

My letter is going to all of the local TV stations here in my city, and it goes like this:

Dear News Director,

We’re in the middle of a very important month for me, and others like me. November is Diabetes Awareness Month. Next Wednesday, November 14 is World Diabetes Day.

I’ve been living with Type 1 diabetes for nearly 22 years, from the time I was 28 years old. I’d like to take the opportunity during this important month to talk about how your organization covers diabetes over the course of the entire year. Over the years, I’ve seen stories about diabetes reported many times, and some of those times, I’ve become concerned about how diabetes is covered, or how issues related to diabetes are covered. I’m very concerned about how this affects the way people with and without diabetes view each other. So if I may, let me dispel a few diabetes myths.

Diabetes is all the same. Actually, there are many types of diabetes. The most common is Type 2, where the body has trouble using the insulin it produces. About 90% of new diagnoses are Type 2. There’s Type 1, which is an autoimmune disease characterized by the destruction of insulin-producing cells in the pancreas. But there’s also Type 1.5, or Latent Autoimmune Diabetes in Adults (or LADA), which researchers are still discovering more about, and Gestational Diabetes, where women have high blood glucose levels only during their pregnancy. It’s discovered in about 4 percent of all pregnant women.

It’s important to note the differences in diabetes, because while we all have the same serious, chronic condition, the way we approach and treat the different forms of diabetes can vary widely.

Diabetes is preventable. Let me say it clearly: People don’t get diabetes from too much sugar, or by being overweight. I developed Type 1 diabetes because my body’s immune system attacked my pancreas and killed the insulin-producing cells there. I was in great shape, at an optimal weight, active all the time, and otherwise, very healthy. In addition, many Type 2s are diagnosed without being overweight and while maintaining healthy diets.

Diabetes can be cured. Actually, it can’t. We can help mitigate the effects of diabetes through diet, exercise, and overall blood glucose management, but we can’t cure diabetes through drugs, or meditation, or blueberry yogurt, or anything. Anyone who says different is woefully under-informed.

People with diabetes cannot eat sugar. In fact, we can eat sugar. We just have to have the appropriate amount of insulin to account for it (your body already does this all by itself). We can also hold down a job, compete in athletics, bear and raise children, and do all of the other things that non-diabetics can do.

Those are just a few misconceptions I’m hoping you can help put to rest.

So, how can you help? What can you do to report on diabetes in an accurate, compassionate way? I would invite you to add media@diabetesadvocates.org to your e-mail contact list. Diabetes Advocates is a non-profit group of knowledgeable patients dedicated to advocating for, among other things, accuracy in reporting on diabetes. By using the e-mail address above, reporters can fact-check and get questions answered by people… actual patients… in the know. In case you’re wondering, I have no affiliation with this group. But I believe in what they do.

Through your efforts, your organization can help communicate a true, accurate portrayal of diabetes and People With Diabetes, and our many unique qualities. You can help dispel myths for those not living with this disease; reduce fear among those newly diagnosed or those at risk of developing this disease; and promote a positive message for everyone affected by diabetes. And that’s everyone.
 
 
 

By StephenS | Tagged , , | Comments (2)

Your Diagnosis.

November 8, 2012 – 9:25 am

Before today’s post, I want to let you know that I’ll be listening in on a health activist roundtable presented by WEGO Health on Friday, November 9th at Noon EST. I don’t know who will be on the panel, but I’m guessing there will be at least a couple of your favorite rock-star bloggers. Look for tweets by @WEGOHealth. You can follow along with the discussion on Twitter by going to http://tweetchat.com/room/hachat

Now on to the show!

In the past week or so, I’ve been reading a lot (at least to me it seems like a lot) of posts from PWDs telling their stories about being diagnosed. I must confess: I can’t stop reading them.

Like the proverbial race fan who only goes to the track to see the cars crash, I have to read them all. I’m hanging on every word, and I can’t turn away until I’ve read every last detail about someone’s bad experience with a doctor, or someone’s parents dealing with the diagnosis of their child.

Why? Why am I so intrigued by one of the saddest days in someone life?

I think (read: I hope) some of it has to do with the two things that People With Diabetes are blessed with: empathy and resilience. Let’s look at them one at a time:

Empathy. Once you’ve been cursed by the big D, you never look at another’s struggles the same way. Simply put, we don’t want another man, woman, or child to go through what we’ve gone through. And when we do see another diagnosis, we feel the same sadness, the same anger all over again. We want to do something about it. Every day I’m amazed at how much is being done to raise money, increase awareness, and provide grass roots support for all of us.

Resilience. When you consider where a lot of these stories begin, it’s uplifting to see how far all of us have come. Diabetes is difficult, it’s frustrating, it’s a full-time-never-ending-no-good-backstabbing-kick-you-when-you’re-down thing that never lets up. Yet we live real lives, with plenty of successes to go with the failure of our pancreases. Every day, PWDs are proving that we can do everything anyone else can do except produce insulin. Yeah… that is uplifting.

So if I take a particular interest in your diagnosis story, please don’t think I’m wacky. I want to support you. I want to be enlightened. I want to be uplifted and empowered.

Thank you for telling your story.
 
 
 

By StephenS | Tagged , , | Comments (4)

What Am I Doing?

November 2, 2012 – 4:09 pm

Well, T1D Day has passed, and unfortunately, I can’t say that I have a lot to show for it. Sometimes these milestone days pass before I can make any kind of serious impact.

The good news is that it’s just the beginning of Diabetes Awareness Month. That means there are a lot of things I can still do to increase awareness and help champion our cause. So what am I doing? How do you advocate for something you feel strongly about?

First, I hate the phrase “lead by example”. Only because whenever that’s used, it seems like someone is saying that leading by example is enough. Well, it is for some. Just not me, not right now. So I want to start to lead by example. That means managing the BGs well, staying as healthy as I can, and not judging others based on their success or failure of the same.

I’m also trying to keep people informed, as much as I can. There are several D-Awareness Month initiatives out there, and I’ll be letting readers of this forum know about them as much as I can.

On top of that? I got my Blue Circle merchandise from the IDF/World Diabetes Day merchandise page, and I’ll be handing out blue circle pins and bracelets to practically everyone I know this month. Almost all so far are completely unaware of Diabetes Awareness Month, World Diabetes Day, or the Blue Circle. So they get a quick info session on top of the swag. I’ve already had one person ask me about the blue circle pin I’m wearing, and that’s a good thing too.

Stealing an idea from someone else in the DSMA Twitter chat this past week, I’ve started to inconspicuously place D-related reading material around the workplace. This kind of thing is generally frowned upon where I work, so I have to be careful with this strategy to avoid running afowl of the people in charge. This whole idea sounds like it has an element of danger to it, which must be why I find it so appealing.

Finally, you might have noticed that I’ve updated this site, at least for November. I kinda like the blue, even though red is my favorite color. I also added the photo, showing my blue circle pin and bracelet, which I’m going to try to wear all month long.

Wow, when I look back and read all of that, I realize it’s probably not that much in the way of increasing awareness. But it’s a heck of a lot more than I was doing last year, which was nothing. November has just begun, and I’m still looking for more impact.

Is there anything special that you’re doing this month? If so, feel free to let me know. I’d love for everyone to hear about it.
 
 
 

By StephenS | Tagged , , | Comments (3)

Champions for The Cause.

October 24, 2012 – 1:52 pm

I want to recognize a few people today. I like shining a light on someone else’s accomplishments. It helps me to remember that I’m not the only one with an important story to tell.

You’ve probably read about Jeff Mather, Victoria Cumbow, and Moira McCarthy, and their participation in the JDRF Ride for a Cure in California this past weekend. Congratulations to all for making it through the day!

Obviously, there are no circumstances under which biking through Death Valley is easy. It’s hard. 100 degree heat, altitude fluctuations from sea level to 1,250 feet, and a 105 mile course. Think about that for a second… now, add diabetes to the ride (like Victoria and Jeff had to do). I am in awe of their accomplishments, and a little jealous too. I wish I could’ve been there. But this is not about me.

It’s about the amazing amounts of money these people raised for JDRF. Together, the three of them raised over 52 thousand dollars to help fund research and find a cure. Can you believe that? Do you know how significant that is?

So before too much time gets away, let me say it: Thank you. Thank you for doing this for me. Thank you for doing this for the kids. Thank you for doing this for the parents.

Your efforts, both physical and financial, are a big shot in the arm (no pun intended) for all of us affected by this disease. In my book, you are all Champions.

Now get some rest.

To read Victoria’s story, click here

To read Jeff’s story, click here

To read Moira’s story, click here

There’s still time to contribute to one or more of these riders:

Victoria Cumbow

Jeff Mather

Moira McCarthy
 
 
 

By StephenS | Tagged , , | Comments (4)

JDRF and ADA Events.

October 23, 2012 – 10:01 am

That’s right… I put both of those organizations into the same headline. That’s because there are a couple of things coming up that you should know about:

– The American Diabetes Association is doing a Twitter chat this Wednesday. No, it’s not at 8:00 p.m… that’s the DSMA Twitter chat. The ADA Twitter chat is at 1:00 p.m. EST here in the USA (10:00 a.m. on the West coast, 6:00 p.m. in the UK, 4:06 a.m. in Melbourne & Sydney).
The chat is all about patients rights. To participate, you can follow the ADA Twitter handle (@AmDiabetesAssn), and look for the hashtag #DiabetesRights. Katie Hathaway, Managing Director in ADA’s Legal Advocacy group, will be answering questions. Promises to be an interesting hour.

– JDRF is sponsoring Be T1D For A Day in November. This is an opportunity where non-Type 1’s can sign up to receive text messages that will simulate the various things that T1Ds go through all day, every day, without a vacation. Let your non-Type 1 friends and family (and maybe teachers, bosses, traffic cops, and TSA agents) know that they can sign up before November 1st by texting T1D4ADAY to 63566. You can also sign up via the web by going to:
http://www.protexting.com/out/signupform.php?code=ztvdwbtnrrofceym

I’ve got to get someone to sign up for this. I’m dying to find out what the text messages will be like (“2:00 pm: You’re hypoglycemic. Drink juice and down 5 chalky glucose tabs, then find a sunny spot to sleep in for the next two hours”).
 
 
 

By StephenS | Tagged , , , | Comments (0)