“Sugar Babies” film shows wrenching rise in childhood diabetes, and needs funding

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Even after living with type 1 diabetes 40 years, tears sprung to my eyes watching the trailer of “Sugar Babies”, the rising epidemic of diabetes in children. Two and three year olds taking shots and pricking their fingers constantly like 4-year old Caidence above. Ten year olds with type 2 diabetes largely because we’re larger. 

Jenny Mackenzie, mother of a type 1 daughter, and award-winning filmmaker is trying to raise $30,000 to finish her eye-opening film on childhood diabetes. Whether you contribute any money or not, a dollar or ten or nothing, watch, you will be moved. You will remember when children live this way what it really is to be, and to have, a child with diabetes.

Isn’t it time that people really understood what it’s like to live with diabetes, and we make it known?

From Roche to the T1D Exchange, from happy to hopeful

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I just got back from a whirlwind of diabetes activities. First there was the 4th annual Roche social media summit. Above my fellow diabetes influencers, hairnets and all, touring the Roche manufacturing plant. 

Thirty or so of us diabetes bloggers were hosted to one and a half days at Roche’s HQ in Indianapolis, paid hotel and meals. This meeting drew some new diabetes influencer   s than past meetings.

This year’s meeting was also different than the previous two years. Roche shared with us their new products in development, the launch of their new small, backlit, no-coding, meter Nano, and we heard from two inspirational speakers–one who lost both his legs, Josh Bleill and, type 1 Steven Richert, who is using rock climbing as an analogy for, “We can do whatever we believe we can do!” We were all moved.  

Truth is, I had no time to write about the meeting and do it justice but many of my DOC (Diabetes Online Community) fellow bloggers did, so you’ll find a few of their reports linked above, and lots of posts by googling ‘Roche’s social media summit 2012.’ AlsoDavid Edelman captured the two day meeting with all its activities. 

The day after I returned from Roche I headed up to Boston to meet with some major players in the diabetes arena: I met with Patients Like Me.com, a health data sharing information site. Patients with any of 1,000 conditions can post their health reports, lab tests and all and learn how a treatment is working for someone “just like them.” 

I met with Agamatrix, in Salem, New Hampshire, as part of my investigation on the Huffington Post about meter accuracy.

I met with the T1D Exchange (type 1 diabetes) and I’m inspired by what I heard, more inspired than I’ve been in decades.

I also met with Dr. Michael Dansinger, who writes on WebMD, is a consultant to TV’s hit, The Biggest Loser, and wrote the Foreword to my upcoming book,Diabetes Do’s & How-To’s. Michael is a passionate man working, as only a handful of others are, on reversing type 2 diabetes. And, one night I dined at the 4th oldest restaurant in Boston with Bryce Sady and Marta Murcia, my colleagues from QuantiaMD. They saw the value of educated patients sharing their wisdom and experience with HCPs through a segment called “Ask the Patient” which I’m a part of helping providers better understand how to help their diabetes patients with healthy behavior changes. Such great food, such exciting ideas flying across the table. 

I also, almost by accident, met a woman doing research in bariatric surgery for type 2 diabetes, and got to visit MIT’s media lab. While surrounded by absolutely amazing potential new inventions, I loved the fork that will shake when there’s too much food on it, and the spoon that will collapse when you’ve eaten enough. 😉

Stay tuned for more information on all these visits. All these meetings and learning I will write more about here and on the Huffington Post, but in summary, I was happy seeing my colleagues at the Roche meeting and I am hopeful for all I saw and heard in Boston. 

For now, as you might imagine, it’s time to put some food in the fridge, unpack, and investigate all this further to make the best sense for you of what’s spinning now in my head. 

Are you sowing the seeds for later regrets now?

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I’ve just become aware of a book I’m eager to read but haven’t yet got my hands on. Even so, I thought it worth telling you about it. It’s called, The Top Five Regrets of the Dying by Bronnie Ware. Bronnie became a palliative nurse after doing many other things in her life and spent a lot of time with people who were in their last days. 

I’m not attracted to books like this because I have a ghoulish side, but because I think life is short – easy to do since I’m approaching 60 – and living with diabetes, one wonders will life be even shorter?

I like to know what people value at the end of their lives and what they think they would have done differently given the opportunity to do it all again. Of course, we can never really know if we’d do something differently in the moment without the benefit of hindsight, but still…

So while I haven’t yet read the book, I thought you might enjoy reading the article as I just did. It tells what the top five things are that people regret. 

I won’t spoil the surprise. I’ll just let you know that while I’ve been finishing writing my third book, Diabetes Do’s and How To’s which you will love — it’s just the actions what you need to do to be healthy with diabetes, and how to do them, available this fall–I will tell you I wish I’d made more time for regret number 4. 

Talking with the International Diabetes Federation

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This month I had the pleasure of being interviewed by the International Diabetes Federation (IDF). IDF is a global advocacy organization representing more than 200 diabetes organizations around the world.

IDF’s mission is to increase public awareness of diabetes and encourage prevention and better care for people with diabetes. You may notice this November some buildings will be lit in blue. Blue is the global color for diabetes and this blue circle above is the global symbol. It was created by the IDF.

Every two years IDF holds a conference, called the World Congress, where scientists, researchers, medical professionals, industry people and representatives from around the world come together to learn and share. 

Last year it was in Dubai, where diabetes is rampant – 1 in 4 have diabetes – and I had the pleasure of being invited as media from the Huffington Post. Now that was a trip – in every sense of the word!  

I also had the distinct pleasure of getting to know several of the hard-working folk from IDF and hope to join them again December 2013 when the World Congress moves to Melbourne, Australia.

But for now, have a read. 7 brilliant answers to 7 interesting questions.

What does it take to help patients change behavior?

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I haven’t said much about it over the past few months but I’ve been working with QuantiaMD — a web site for health care providers — to answer provider’s questions about how to work better with diabetes patients. As you might imagine most of the questions had to do with behavior change: “How do I help my patient eat healthier?”; “Why does my patient start doing better, like taking their medicine and exercising and then just stop?”

So I’ve been teaching some basic principles of behavior change and coaching in three presentations, with four more to come, and I thought it time to share. 

1. “Rapport before report”: This first presentation is about seeing the patient in front of you, not just their numbers.

2. “Why patients don’t change behavior and what you can do” : In my second presentation I discuss whether patients have the correct information? Do they understand what to do? Do they have the skills they need? And does fear stop them?

3. “Three more reasons why patients don’t change behavior and what you can do”: In this presentation I talk about the importance of patients choosing the behavior they’ll change, whether their motivation not to change is greater than their motivation to change and does their environment support the change? And there’s a last reason: Do you as a health care provider model the change?  

Unfortunately we know most doctors today will treat more patients with chronic illness than acute, and most doctors are not trained how to do so. I’m honored to have the opportunity to address all those who help to keep us well. 

To view the presentations, you’ll be prompted to register on QuantiaMD, but it’s free and the presentations are each about six minutes long.

So pour yourself a cup of tea, pull up a chair and open your mind to the possibilities of doing a few little things that can deliver powerful results. 

American Diabetes Association conference highlights

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I want to tip my hat tonight to my colleague Amy Tenderich over at DiabetesMine.com for her reporting on the American Diabetes Association’s (ADA) annual conference that just ended today. 

Once a year the best and the brightest get together to report out new scientific research discoveries, this year as you might imagine there was a lot of discussion about the artificial pancreas closed loop system. It’s also the best place to roam through the exhibition hall and see what new devices are coming to market, and I hear there are also now presentations on the behavioral aspect of managing diabetes.

Amy wrote two posts on what she found there which I encourage you to take a look at. It’s an easy way to get yourself up to date pretty quickly on what’s going on in diabetes research and products and catch some of the highlights of the conference:

What’s Hot from ADA 2012

ADA 2012: Diabetes Company Updates from the Expo Floor

Now you see me, now you don’t, diabetes

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There’s a strange phenomena that comes with living with diabetes. Perhaps the same as living with any illness or condition that slowly, gradually, over time, progresses. So slowly we don’t see it progressing; I certainly don’t feel it progressing.

It progresses whether we take care of it or not. In the background, slowly during the ordinary days when I get up, work at my computer, meet friends for lunch, walk through the city, laugh through dinner out with my husband.   

If I look back I know exactly when my ophthalmologist told me she saw the first sign of an eye problem – a slow growing cataract when I was 52. The first sign, after 34 years of being so relieved I had no eye problems, now I did.

I remember exactly when I got my first, of the two I’ve had, frozen shoulder. It was the day I got off the plane after living in Tokyo for six years. Day after day my shoulder became more limited in its movement and more painful. 

For a year I went from my endo to my family doctor to an occupational therapist, even a chiropractor while I was visiting friends in San Francisco. But it wasn’t until my mother told me to go to her chiropractor when I came home that my shoulder was properly diagnosed and treated. My second frozen shoulder 15 years later needed an operation. When I asked if this could recur, my ace surgeon said, “Maybe, in about fifteen years.”

I consider myself lucky that after 40 years of living with type 1 diabetes I have relatively little to show for it. Yet, when I sat in the doctor’s office four years ago and was lucky enough to hear I had a significant hearing loss I could only cry and think diabetes. 

When I notice my calves cramping more than usual, as I have the past few weeks, I can only think neuropathy. And while I notice for the first time an odd pulsing in my forearm, like a string being pulled on my nerves, and it subsides, but never really goes away, I think, diabetes? 

Now you see me, now you don’t, diabetes. You are there and not there. I can forget you, but never as long as for a day. While I believe I’m better off to work hard at keeping my diabetes in control and complications at bay, I also know, I cannot control anything, least of all whether complications will creep in in the mist of day, while I’m trying so hard, or during the dark of night, while I’m hoping only to wake up in the morning.  

The first meter that works with your iPhone, iBGStar

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Two weeks ago I was invited, along with a handful of diabetes bloggers and advocates to Sanofi’s (third largest global pharmaceutical) corporate office in New Jersey on the eve of their launch of iBGStar. They secured FDA approval December of last year.

If you haven’t heard of iBGStar, it’s a new blood glucose meter that plugs into an iPhone or iPod touch. Using the iBGStar Diabetes Manager App it’s the first meter to work as a mobile health device. Shawna Gvazdauskas, VP and Head of Diabetes Devices, for Sanofi U.S. brought us together along with 7 members of her team to see the iBGStar up close and personal.

With the iBGStar (I is for  iPhone, BG blood glucose and Star their new line of devices) and its App, patients can record, track, manage and share their data, anytime, anywhere. The premise being that you always have your phone with you. I don’t, but I seem to be a minority of one.

The iBGStar captures blood glucose readings, records carbs and insulin doses, tags readings according to mealtimes and allows you to add customized notes about each meal or exercise. You can analyse the data using a logbook, trend chart and statistics. Color-coded screens indicate if blood glucose is too high or too low. You can of course show your doctor your handy, dandy phone, now turned into a mobile health device and/or email your results.

So, is this just moving furniture on the Titanic, or a real advancement for helping patients better manage their blood sugar? It all depends on you. But Sanofi’s intent, we heard, was to offer a device that “meets patients where they live and changes their experience of managing diabetes.” 

The meter can be used on its own, without the iPhone or iPod touch. It is the width of an iPhone as you can see and less than 1 inch tall, light as a feather, has a 6 second countdown, uses 0.5 microliter blood size, one of the smallest amounts, and meets accuracy requirements.  There’s no coding although that I would expect these days.

As a Sanofi rep said, “The hope for patients is maybe they will get more engaged with their numbers during idle time in the day. For doctors, a patient have their logs with them when they arrive at their appointment.”

Naturally, we all got to play with this nifty little device and walk away with one and 10 strips to see what we think. The only thing that bothered me was it consistently gives me a reading 20 plus points higher than the meter I’ve been using, the Bayer Contour. The thing is I don’t know which is more correct, and you should know, if you don’t, that meters are allowed to be 20% inaccurate. When I asked the question how does one know if the numbers you’re seeing are accurate, the response I got from a gentleman on the marketing team is it’s best to use one meter and get used to how it’s judging your blood sugar. That’s probably the right answer but less than satisfying.

If you’re wondering what these little meters cost and where you can get one, they’re available at Apple and Walgreens retail stores and online at Apple’s online store and Walgreens.com. Apple charges $99.95 for the device along with 50 strips and Walgreens $74.95 with 10 strips. 

Sanofi offers a copay assistance card so strips will not cost more than $20/order. Sanofi also plans to integrate their GoMeals app with the iBGStar Diabetes Manager App.

It will certainly be interesting to see what other “Star” devices are in the pipeline.

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Sanofi’s Shawna Gvazdauskas, Brian Dolan of mobile health news, me, Emily Coles, Laura Kolodjeski, Sanofi Senior Manager, Patient solutions, Allison Blass of DiabetesMine, Kim Vlasnik of Texting My Pancreas.com, Kerri Sparling of SixUntilMe.com, Adam Brown and Kelly Close of Close Concerns. Blogger Leighann Calentine of D-Mom and analyst David Kliff of Diabetic Investor attended the meeting but had to leave before the photo was taken.

What I learned from Alice Sommer Herz

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Last April at just about this time I was the dinner speaker at Diabetes Sisters’“Weekend for Women.” One hundred women with diabetes gathered in Raleigh, North Carolina for a weekend of bonding and learning. The weekend’s theme was ‘Celebrating Our Strengths’ and that was the theme of my talk.

I began with the life story of Alice Sommer Herz, the oldest living survivor, now 108 years old, of the Holocaust. You are probably wondering, as were the women gathered in front of me, why I would talk about a Holocaust survivor? This is why: Alice is a perfect example of using our strengths to get through troubling – for her harrowing – times, and thrive. 

Alice, her husband, Leopold, and their six year old son, Stephan were rounded up and sent to the Nazi concentration camp Theresienstaadt. Alice’s mother had been sent there three months earlier. Her mother would die in the camp. Her husband would die in an extermination camp and Alice and her son would two years later be freed. 

When Alice entered the camp she was already a budding concert pianist and she was ordered to play in Theresienstaadt’s orchestra. She knew she had a choice: refuse or resent the request or let music be her salvation and release her from the day to day suffering. Forty-four thousand people lived in the camp barracks that were built for three thousand. A piece of bread and bowl of broth was all they got to eat for the day. But Alice let go of anger, which could have destroyed her strength and spirit, and chose to play music with an open heart.

Alice survived, one might say thrived, under such austere, horrid conditions because she did not succumb to anger, resistance and hatred. Do you see a connection now with diabetes? She spent as much time as she could doing what she loved, playing music. She found a personal reason to stay as healthy as she could, which was to protect her son. And she remained hopeful for a better future. Throughout, Alice did not hate but maintained her optimism.

Reading Alice’s autobiography, A Garden of Eden in Hell, I found so many lessons for us living with diabetes:

1) Find a reason why it’s important to you to stay healthy

2) Grieve and move on, always looking forward

3) Rely on your strengths to get you through

4) Do more of what you love

5) Have a network of support

6) Be hopeful and expect things to get better

As Alice wrote in her book, “I have never learned to give up hope.” And neither should we.

The circle of diabetes, we are seen and unseen

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I took my weekly walk to Trader Joe this morning and as life sometimes serves up unexpected connections I found the woman behind the cash register has a son with type 1 diabetes. She told me reading the logo on the jacket I was wearing. 

He got it at three and is now fifteen. I felt our immediate bond as she packed my greek yogurt both smiling and looking apprehensive. She told me his A1C,  and her concerns. “How will he ever be able to take care of himself? I worry,” she said. I was surprised, why wouldn’t he be able to take care of himself? We find our way.

As I swiped my credit card she told me she’s heard there should be an artificial pancreas in his lifetime and this would really help. I said with some confidence that I thought probably within ten years. Then she said, “but still I don’t know how if he’ll be able to take care of himself.” As the eggs went into my bag, I heard her say “autism.” I had missed it earlier. Yes, her son has type 1 diabetes and autism. My heart heaved for a moment.

There are many times I feel invisible with this disease. No one notices all the work I put in behind the scenes to stay well. Certainly no one in Trader Joe knew I had diabetes, including the woman now ringing up my sale, until my jacket started a conversation.

Before lifting my bag of groceries, I took her hands in mine. She said, “I hope it will be OK.” I thought what can I say? I said, “I hope so too” and over a shared smile, turned and walked back into my life.

I relayed this story to my husband over lunch. I said, she must feel the same as me, unseen. How many people know her son has type 1 diabetes and autism? How many people know how hard she works to help him and her worries for his future? I wonder do her co-workers know? I can’t imagine. 

In telling my husband this story he said, “Write it.” And so I have.