Tag Archives: diabetes online community

Eyes On The Prize, People.

March 7, 2013 – 10:00 am

As you’ve no doubt read already, some feelings were hurt this week when the Diabetes Research Institute did a press release touting their new idea, the BioHub. It included a carefully edited 5 ½ minute video (that I’m purposely not sharing here), that finished by trying to give us the feeling that the only thing holding back their idea from becoming reality was the amount of money, or lack of it, that we could raise for DRI. Making the problem worse for some was a pre-release blog post from Diabetes Dad Tom Karlya, who stated in his title “This Could Be It… What We Have Been Waiting For Since Diagnosis!!!!”. Tom has since posted not one, but two mea culpas on his site post-release.

As I’ve alluded to above, there has been much wringing of hands over this thing, outrage at times, and honestly, if I weren’t so busy, I would include all of the links to those posts here. But if I may, let me just say two things about this ordeal, and then it will be finished for me, other than being a reminder of the power of the internet pen and a reminder once again to carefully choose my words.

First, let’s remember: We’re not any worse off than we were a week ago. My life goes on. I still have diabetes, yet I still look with a hopeful eye toward the future. Not so much for me, but for others who are younger than me. If I can do anything to help eradicate this disease from our planet, or make lives better while living with diabetes, I’m all for it. That hasn’t changed, and it won’t change, regardless of whether a momentary research and marketing (or is it marketing and research?) buildup succeeds or fails.

Second: For me, this entire episode seems to show just how remarkable, and powerful, this Diabetes Online Community that we all talk about really is. Remember Kerri Sparling’s words from that Morning Edition piece on National Public Radio back in December? Quoting from the story:

Blogger Kerri Sparling isn’t worried. She says the diabetes online community can tell when something’s fishy. “If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there’s going to be a voice raised saying, ‘Wait, wait, wait, that’s not true! Or, ‘Don’t come in and spam our community.’ We protect ourselves in that way,” she says.

Isn’t that what’s happened here? Sure… someone with a personal and a monetary interest in seeing DRI succeed got out ahead of a story and in some places, was vilified for it. This may not be true at all, but I suspect both the blog post and the press release on the BioHub were part of the same marketing package. I’m sure that as a result of what we’ve seen this week, both Tom and DRI will be very careful about how they pitch an idea in the future. That’s what is supposed to happen in a situation like this. On the other hand, if you read many of the comments on his own blog, you’ll see that there are many who support Tom and didn’t think they were mislead at all.

This is all good. We need diversity of thought to keep this thing strong. Whether it’s discord or disappointment, when these things happen we need to talk them out. Think them through. Not everyone will agree on every point. But the discussion will eventually bring us to a point where we’ll all be able to move forward.

Oh, and one other thing, and I’m not taking sides here: Don’t forget that ultimately, Tom Karlya’s goal is the same goal we all have. I still have my eyes on the prize. I’m ready to move on. You?
 
 
 

By StephenS | Posted in Social Media | Also tagged , , | Comments (2)

Make your Valentine’s Day meaningful – #sparearose

February 13, 2013 – 12:13 pm

Spare_A_Rose_1

It’s official… I’m the last Diabetes blogger to post on this subject. But just in case you haven’t read about this yet, let me lay the groundwork for you. Because this is very important.

A number of Super Diaheroes (including Kelly Close, Manny Hernandez, Bennet Dunlap, Kerri Sparling, and Jeff Hitchcock) got together with Johnson and Johnson on an initiative to use social media to make a difference… right now.

Valentine’s Day is tomorrow. It’s a time when a lot of roses are given. Usually a dozen at a time. What we’re asking is that you buy one less rose this Valentine’s Day and share the value of that flower with a child with diabetes in the developing world.

How do you do that? You donate the value of that one rose to the Life for a Child program under the auspices of the International Diabetes Foundation. According to the IDF:

“Donations to the IDF Life for a Child Programme are carefully directed to key areas of diabetes care and management so that established paediatric diabetes centres and associations can provide the best possible care, given local circumstances, to all children and youth with diabetes in developing countries.”

What that means is that in places where diabetes has previously been a death sentence for a child, kids are provided with insulin; meters, test strips, and lancets; diabetes education; and even diabetes training for local medical staff.

So please, join the Diabetes Online Community by showing your support to the Life for a Child program. Click on the banner above or click on this link to make your donation: http://bit.ly/SpareRoseSaveChild

Give ’til it hurts, people. Because this is important. Lives are at stake. You can help to save lives today by making a donation… Tweeting about the initiative using the hashtag #sparearose… and if you haven’t already, blog about it too. For all the details, go to the Diabetes Advocates website: http://diabetesadvocates.org/c/spare-a-rose-save-a-child/
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , , | Comments (4)

January DSMA Blog Carnival… New Year with Diabetes.

January 29, 2013 – 10:44 am

Ohmygosh! It’s almost the end of January, and I haven’t completed my post for the January DSMA Blog Carnival. If you’re writing about your diabetes too, you should participate. Just write a post on the subject and link to it on the DSMA Blog Carnival page.

This month’s blog carnival topic asks us to fill in the blank:

New Year with Diabetes : Striving for _______ in 2013

To be honest, I could have taken the easy way out and used my January 2 post this month. But that post really talked about my life overall, and what I would like to accomplish this year to be a more well rounded person. Since we’ve still got a few days left in January, I’d like to narrow down my focus to just diabetes here.

I think what I’m striving for in 2013 is a continuation of what I started in 2012. I want to get out there and get engaged with the rest of the world. A few times in the past year people have asked me about my story… you know, the “tell us all about your diabetes” story. Each time, I found myself describing this sequence of events where I was diagnosed, went off to live my life, and kind of lived in the woods with my diabetes, so to speak. Not doing anything to help anyone, not learning anything new, not knowing much beyond what I knew on the day of diagnosis. But since last year, I’ve been trying to change all that.

I want to find my way out of the woods and into a place where I can get some clear footing with my condition. I want to learn about new therapies, new ideas. Converse with others going through the same issues and share valuable information, because together we are worth more than the sum of our parts.

In 2013, I’ll be striving to get my diabetes out into the sunshine, and I’ll be trying to help others do the same. I hear it’s warm out there.
 
 
This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at
http://diabetessocmed.com/2013/january-dsma-blog-carnival-2/
 
 
 

By StephenS | Posted in DSMA Blog Carnival | Also tagged , , , | Comments (2)

NPR Reports on the DOC.

December 4, 2012 – 10:23 am

On Monday, National Public Radio’s Morning Edition ran a story (find it here) that talked about how People With Diabetes are connecting with others via social media. Kerri Sparling of Six Until Me was quoted, as were Dennis Urbaniak of Sanofi, Jeff Chester of the Center for Digital Democracy, and Jason Bronner of the UC San Diego Medical Center.

The piece talked a little about how Kerri connected with the online community; and it also talked about her endorsement deals, her disclosure of such on her site, and whether that’s appropriate. I think the appropriateness was raised with regard to drug companies and medical technology firms, and whether they have undue influence on the people they’re supporting. And whether they are disclosing that too.

So what’s my take on the story? Was it really fair? My feeling is yes.

I’m totally okay with the story and how it was told. I think the reporter, Lauren Silverman, was trying to shine a light on all sides of the issue. That’s what should be done. However, if I may, I’d like to focus on statements made by two people in the story.

First, there was the statement by Jeff Chester of the Center for Digital Democracy: “People do not read disclosures. The FDA and [Federal Trade Commission] need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies”.

Well, I do read disclosures. Maybe I’m in the minority here. But I’m interested in how someone describes their working relationship with a vendor. From what I’ve read from other bloggers so far, I have reason to believe that people are being honest when something they’re trying out is less than par, if indeed it is. Even if a drug company or medical technology firm is asking for (or hoping for) an endorsement.

That said, I certainly recognize the possibility for companies to try to overplay their hand in working with members of the DOC. I’m okay with the FDA or the Federal Trade Commission stepping in to set boundaries. But let’s not make a blanket statement that may lead people to believe that everyone’s on the take, okay? It’s more complicated than that, and so far, the bloggers and organizations that make up the DOC appear to be well behind the line of inappropriateness (wow, big words).

As far as advertising is concerned… well, we’re talking about blogs here. If you’re reading someone’s blog and you see a logo with a link to look at the latest Accu-Chek Nano® meter, you know that person or entity is being paid for it. I’m also skeptical enough to believe that people aren’t always in love with everything they’re being paid to advertise. Again, maybe I’m in the minority here, but I hope not.

The second statement I really have an issue with is this, from Jason Bronner, a doctor at the University of California San Diego Medical Center. He says: “There’s no proof in diabetes that social networking is helpful”.

I can’t speak for everyone. But I know that statement is absolutely false when it comes to my own experiences.

Through social networking, I’ve not only gotten the support that I’ve never, ever experienced in real life. I’ve also learned a great deal about products, new therapies, and yes, how to properly disclose a working relationship. I’m going to go out on a limb and say that I’m in the majority on this one.

Dr. Bronner does mention later that “We know a lot of patients are on the Internet. Patients are more likely to get information from the internet than they are from the doctor”.

Well, yeah… some of us only get a few minutes every three months with our doctors. We can get hours per day via social media. So instead of “leading a study that will help determine whether social networking can actually help patients manage diabetes”, and making statements like that before your study is complete … why aren’t you researching ways that doctors, diabetes educators, and other healthcare professionals can reach out to patients through social media and actually partner with them to help them achieve their goals?

Of course, if they did, they themselves might find a couple of juicy endorsement or advertising deals.
Which I hope they would properly disclose. #sarcasmintended
 
 
 

By StephenS | Posted in Social Media | Also tagged , , , , | Comments (3)

Into the Time Machine: 1991

August 7, 2012 – 9:27 pm

Hello Stephen… it’s me, Stephen. 21 years later. Now that some time has passed, I thought it would be cool to send a letter back into the time machine. I hope this note helps you navigate the next couple of decades.

When you were diagnosed, you were told that you would need to give yourself 2 injections per day, every day, for the rest of your life. That must have seemed overwhelming. I remember you did the math in your head right away: twice per day, 365 days a year, equals 730 injections per year! That’s 7304 every decade. Now, this may sound like lame advice, but hear me out. Today, when I start to feel overwhelmed, I try to break things down into small steps. I try to keep the overwhelming from becoming overbearing by doing what I can do now. My point is that diabetes is a one-day-at-a-time disease anyway. And each day builds upon the next to determine how you’re doing in the future. While that may seem daunting, you can still only live this thing one day at a time. So don’t worry about tomorrow or yesterday. Your best chance to live well with diabetes is today. Tomorrow, repeat those last two sentences to yourself. Rinse. Repeat. At some point, sooner than you think, you’ll feel less overwhelmed.

When it comes to diabetes-related supplies, remember: You’re the customer, and the supplies are products. Whenever possible, take things out for a test drive, so to speak. Find out what works best for you. How to start? Seek out answers from others. In person at first. Later on, you’ll discover this Diabetes Online Community thing where you’ll be able to get firsthand accounts from people using all sorts of things you haven’t even heard of yet. Use their(our) expertise to help you make an informed choice.

When a doctor wants you to take a new drug, or do something new, ask them why. If they can’t give you a credible answer, you might want to consider waiting to fill that prescription or start that new program until you find out more. And if you do take their direction, try to find a measurable way to gauge whether you see an improvement. If a new drug or new program doesn’t help you improve your A1c, or your cholesterol, or your blood pressure, don’t be afraid to tell the doctor that you won’t do that anymore. And tell them why. If you take this advice, you might be able to avoid a certain ugly episode with a doctor that sees you as a paycheck rather than a patient. It’s okay for doctors to make lots of money. It’s not okay for them to treat you like crap, then expect to be paid. Trust me, you don’t want to know any more about it than that.

Let’s talk about burnout. I’m not sure how to break this to you, but if you’re feeling diabetes burnout at some point, you’ll be in a select group that includes about 99.5% of all People With Diabetes (PWDs). And the other half percent is lying. In other words, you won’t be alone. If this happens in about 10-15 years or so, you’ll be able to find hundreds of resources online. This will probably be a time when you’ll need less advice and more support. A shoulder to lean on. So use this Diabetes Online Community I mentioned before (the DOC) to seek out that support. They’re very, very good at it. It’s hard having to do this everyday. And it sucks. So when you’re feeling burned out, use this resource to help prop you up. Then do the same for someone else who needs a boost.

I know that in the next 20 years or so, this diabetes thing will make you worry occasionally. You’ll get mad from time to time. You’re going to feel guilty because you can’t find all the answers yet, or because someone else is suffering more than you. There are going to be times when you’ll wonder if you’ll ever figure it out.

Those things come with the territory. But they will make you stronger, even though it won’t feel like it at the time. Let’s talk about those another time. For now, remember: one day at a time; make the best decisions for your care, and don’t be afraid to ask questions; and seek out help when you need it. That’s enough for now. Keep doing your best. And don’t forget to think of others and help them whenever you can. I’ll be in touch… back in the future.
 
 
 

By StephenS | Posted in Into the Time Machine | Also tagged , , | Comments (2)