Social media isn’t just for patients

Support and idea spacePhoto social media

The social media space isn’t just support space for patients – which is incredible enough – but also “idea” space for medical device manufacturers if they’d only look. 

That’s what writer Amy Munice, blogger Amy Tenderich of DiabetesMine’s Design Challenge, her inspired device designers and I think. 

According to Amy Munice, “The foolproof way to get the right mix in social media messaging and pave the path for future patented technology, above all, is to focus on listening…all new product developers tapping into the likes of Twitter, Facebook and LinkedIn and disease-specific niches in the blogosphere at every stage of medical device development, could well be the harbingers of engineering and design school curricula in the not-so-distant future.

To read the full article click here.

Dr. Oz’s SharecareNow picks “Top Ten Diabetes Influencers”


Top Ten Diabetes Influencers

Ten diabetes advocates in the online diabetes community – including yours truly – have been recognized by a new service from Dr. Mehmet Oz and partners called SharecareNow. The company’s mission is to help simplify the search for high-quality online healthcare information. They’ve just released SharecareNow 10 – their list of the top ten people reaching and impacting audiences, from mainstream news sites and personal blogs to community forums and Facebook

I’m honored to be on this list along with many fellow advocates and bloggers whom I know, and also know how hard they work helping to inform, educate and inspire all of us. 

Here’s the list: 

1) Amy Tenderich, DiabetesMine™ 
2) Kerri Sparling, Six Until Me 
3) Kelly Close, Close Concerns 
4) Manny Hernandez, Tu Diabetes / Ask Manny 
5) Leighann Calentine, D-Mom Blog 
6) Riva Greenberg, The Huffington Post 
7) Kelly Kunik, Diabetesaliciousness™ 
8) Elizabeth Woolley, – Type 2 Diabetes / Diabetic Mommy 
9) Kim Vlasnik, Texting My Pancreas / You Can Do This Project 
10) Scott Johnson, Scott’s Diabetes

Diabetes is the first health area SharecareNow is recognizing. Jeff Arnold, chairman and chief architect of Sharecare says in their press release, the diabetes online community has exploded in the past decade, with people relying on these top influencers for credible and reliable information to help them effectively manage their disease, while also finding support through their online relationships. SharecareNow hopes to enable these key influencers and medical professionals to connect and expand the conversation, with the goal of reducing disease rates and improving the health of millions of people.”  

I don’t yet know how SharecareNow intends to do that, but it’s a good goal and I’m curious. If SharecareNow can help carry what we all do further, that’s a win/win/win: for us, for them and mostly for patients.

Along with Mr. Arnold and Dr. Oz, Oprah’s Harpo Studios is a partner. Of course I always did want to be a guest on Oprah, somehow I thought I’d be sitting in a couch in Chicago instead of my computer!

Roche and ADA heat up San Diego

As usual at the Roche social media summit I had a lovely time gathering with others in this blogosphere and getting to know several people better. This time it was the lovely Wil du Bois and Bernard Farrell. 

Wil is a man of all trades: type 1, diabetes educator in New Mexico, truly hearing the call to help those in need, author and advocate. He’s also guest posting on DiabetesMine each Saturday.

Bernard is a type 1, technocrat, blogger now with and hails from the misty shores of Ireland. He said one of the most moving things we all heard at the summit. To paraphrase, it’s hard to pick up and play with your child when you fear going low. 

As usual, I have to hand it to Roche, maker of Accu-chek products, who still seem invested in this relationship with the social media community, and they see it as a two way street. Todd Siesky and Rob Muller do the heavy-lifting for the summit, and are maestros. And, if I’m not giving away any top secrets, Rob says not only does he like “yearning” music like me, but he produces it. I’m waiting for the proof!

We had brainstorming sessions about making social media even more impactful and were treated to discussions with the President of theInternational Diabetes FederationJean-Claude Mbanya, the President of JDRF, Jeffrey Brewer, and a presentation from CDE/psychologist Bill Polonsky of the Behavioral Diabetes Institute.

In brief: IDF is looking for greater partnership with American diabetes organizations and bloggers and to make their blue circle for World Diabetes Day the international symbol for diabetes awareness. I love the poster they presented that “O is for Outrage.” We should be outraged so little attention is paid to solve this epidemic that will take down 1 in 2 people within another few decades. Mr. Brewer explained that while JDRF would no longer be referred to by what those letters originally stood for (Juvenile Diabetes Research Foundation) like “IBM” the letters alone will represent the company. This is largely due to the fact that they realize children with type 1 diabetes grow up and they want to be more inclusive. They’re also investing more in management solutions along the way to a cure.

And Mr. Polonsky treated us to a presentation on “safe” and “unsafe” vacations managing our diabetes. Suffice to say if you notice the seasons change before you test your blood sugar you’re on an unsafe vacation, my friend.

The other news is that across the road at the San Diego convention center, the American Diabetes Association’s 71st Scientific Conference began just as we, housed at the Hard Rock Hotel, ended. Was fun to see so many diabetes faces roaming around the sidewalk.

I however did not stay for the ADA conference, so hop over toDiabetesMine where Amy Tenderich has been, and continues to, cover the conference. The conference ends today but she’s collected so much good information she’ll be writing about it for weeks to come.

Meet Ginger Vieira: Creating a big footprint in the DOC

Ginger Vieira


 Ginger Vieira, 25 years old, has lived with type 1 diabetes and Celiac disease for almost 12 years and is creating a large footprint in the DOC (diabetes online community). Ginger is a champion-winning power lifter, personal trainer, yoga instructor and inspirational video blogger, recently adding dLife to her credits

Her young life and work speak to building a life of accomplishment, regardless of and in many ways due to diabetes, and using it to help others.

I also interviewed Ginger specifically about her book, “Your Diabetes Science Experiment” for theHuffington Post“A Diabetic Athlete Shares How To Minimize High And Low Blood Sugar.” 

Q: Do you remember your reaction when you got diabetes 12 years ago, at the age of 13?

Yes, crystal clear! After bursting into tears I asked the doctor if I was going to die. I had absolutely no idea what diabetes was. I spent three days in the hospital, and at first I felt really sorry for myself. Why me? But I started thinking about all my friends and some of the tremendous things they’d been through already – brain tumors, losing parents to cancer, hemophilia, depression, leukemia – and I realized that everybody has at least one kind of immense challenge in their life, and diabetes is one of my challenges. I left the hospital with that attitude and I still carry it with me. Nobody has it easy! So I don’t deserve to feel sorry for myself just because I have type 1 diabetes.

Q: Had you a plan for your future already at age 13 and did you wonder if you could still do it?

Well, I have always, always been a writer. Even in the second grade I was in love with writing. I wrote two different series, one was about my pets and their adventures, and the other was about a girl who grew up in a big family with too many boys in it (my real life!) and they were always getting in her way and screwing things up.

Q: What don’t most people understand about diabetes?

That taking shots and pricking your finger is actually the easiest part. People always say, “Oh my gosh, I can’t believe you do that every day.” It’s really everything else that makes this disease so incredibly complicated. Seemingly simple things like going for a long walk, sleeping in and missing breakfast, trying to concentrate when your blood sugar is too high, trying to have energy at work as a personal trainer when your blood sugar is recovering from being too low!

And the way this disease weighs on your emotions. It impacts how you think about exercise, food, friends, relationships, etc. It impacts literally every single part of your life and I will never expect a non-diabetic to truly understand that because it is so immense.

Q: You’ve set 15 records in power lifting. Did having diabetes motivate you to become a power lifter?

They were really separate goals at first. I joined a gym originally because I wanted to get in better shape and after a year of basic weight-training I’d gotten pretty strong! But when I told my doctor that I was thinking about going into powerlifting, he rolled his eyes. I wanted to prove him wrong and show other people with diabetes that anything is possible. I’ve never been much of an athlete when I was younger, so you can’t chalk it up to incredible genes or something. It is pure determination and persistence.

Q: You’ve done a number of YouTube videos and what’s apparent is your optimism. Do you have difficult days with diabetes and if so how do you get through them?

To be honest I don’t have days where I hate diabetes. Ever. It doesn’t occur to me to get mad at something that is simply part of my life, but that’s because I’ve developed and strengthened the attitude I have towards this disease. I can’t make it go away, so why am I going to waste energy hating it? That would feel like a waste of energy to me.

I also really don’t expect myself to do this perfectly. I don’t beat myself for having high blood sugars sometimes. I’m human, I absolutely cannot attain perfect blood sugars 24/7. So I give myself room to make mistakes, while also expecting myself to give my best effort.

Q: Your business is called “Living in Progress.” Tell me about that and why you call it that?

Coming up with the name was easy because I really believe that we are all constantly evolving. Wherever you are in your life, in how you think about your health and yourself right now, does not and will not be how you think about it even just a year from now. If you want to change something about your life and your health, it doesn’t have to happen overnight. It can be a very gradual progress and sometimes it happens without you even realizing! I’ve seen these evolutions in my own life many, many times.

I work with people one-on-one across the country, over the phone, on goals like making exercise a regular part of your life, improving your nutrition habits, rebuilding self-esteem, developing healthy coping habits, diabetes life management, and emotional eating. Everyone comes with their own specific goals.

Q: How can people shift their view to get away from being so fault-finding and being impatient with themselves and see their life more as a “work in progress?”

Well, that change won’t happen overnight, and it’s a process, but I believe the first and most important step is to really acknowledge where you are right now. To really describe and dig into how you are treating yourself, how you are talking to yourself, what kinds of limiting beliefs you have about yourself.

What has helped me the most in my own evolution is giving myself room to fail, room to be imperfect, and I really, really believe in gradual steps. When I started weightlifting, for example, I had no intentions of becoming a competitor. I grew into that place because I just focused on doing the best I could in the things I enjoyed the most.

Q: You’ve just begun working with dLife as the “Community Leader & Social Media Manager.” What does that involve and what do you hope to create for others?

For starters I’m going to be making video blogs for them with the same energy you’ll find in my own YouTube Channel video blogs. But I’ll also be connecting with people, talking about diabetes in a real way because I live with it in my real life, and providing support, knowledge and encouragement through dLife’s outreach and the many, many resources and information. It’s about support and empowerment.

Q: Who is your book, “Your Diabetes Science Experiment” meant for and what is it you want most for people to take away from it?

The book is for anyone with Type 1 or Type 2 diabetes who wants to learn more about insulin sensitivity, insulin resistance, how proteins, fats and carbs impact the human body with diabetes, and how to adjust your insulin doses for meals and exercise. I also help people understand how to make changes in their diet while adjusting insulin needs to prevent low blood sugars, and I break down how different types of exercise impact a body with diabetes.

The biggest thing I want people to take from this book is that when your blood sugars are high or low, there is a logical reason. And in many cases there really is something you can do to prevent those fluctuations from happening again. You just need more information than what you’re usually getting from the hospital or your doctor.

Q: You say in the beginning of your book that you could probably fill another 500 pages with how much diabetes impacts your thoughts and emotions. Can you give us a little preview of that here?

This disease is 24 hours a day, 7 days a week. There is no way that it isn’t going to affect the way you think. My next book will really bring to light the many aspects of life that diabetes impacts, to help people not only become aware of them in their own life, but also how to work through them. I believe we control how we think. Just as we control whether or not we choose to be offended when someone says something unkind to us, we control how diabetes impacts the way we think about food, exercise, and ourselves. But you have to really become aware of what’s going on before you can do anything about it!

Q: What’s the most fun or fulfilling part of what you do?

The Diabetes Online Community (“DOC”) community is incredible and I’m thankful to be part of that community. They are so supportive of each other! I know if I ever needed anything, really needed help, there are so many people in that community who would be there for me in a flash.

On the other side, I get messages and comments from people every week thanking me for some of the work I do, because of how it’s impacted their lives with diabetes, how they think about diabetes. I’ve gotten messages from people saying my video blogs, as silly as they are sometimes, actually inspired them to start taking better care of their diabetes. Messages like that are gold to me.

You can follow Ginger on Facebook on Twitter

PatientsLikeMe isn’t like any other social media site


Screen Shot 2015-02-07 at 4.17.19 PM

If you don’t know them, you should,PatientsLikeMe. Unlike most social media sites, this one isn’t so much about “chatting” with patients like you as much as learning the real-life health experiences of others by seeing shared treatment plans, meds and symptoms. 

Last week PatientsLikeMe expanded its platform and, while diabetes wasn’t previously represented, now anyone with any condition can join. The site is free and 5 years in the social media space, has almost 100,000 members and represents 500 conditions.

What’s the benefit to joining? In addition to feeling less alone, it’s seeing how others are treating your same condition, how they’re doing and learning what does and does not work for others.

PatientsLikeMe was founded by three MIT engineers, brothers Benjamin and James Heywood and friend Jeff Cole after Stephen Heywood, brother and friend, was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. As the founders describe it, we believe we have a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

Surprisingly, or maybe not so, its members, who are very open in what they post on the site, revealed in apoll conducted by PatientsLikeMe  that 29% have withheld certain health information from their doctor for fear of being lectured or made to feel bad. 47% have chosen not to share certain health information with their employer for fear of losing their job or being passed over for promotion, and 14% have withheld information from insurance companies for fear of not having a procedure covered.

It is the hope of its founders that PatientsLikeMe will help patients help themselves by sharing their real-world health experiences in a world where patients are obviously afraid to share certain things with their health care providers.


DiabetesMine “Design Challenge” open for submissions

My friend, design- and politico-advocate, Amy Tenderich, over atDiabetesMine is once again inviting all your great ideas for new and improved designs for diabetes tools and technologies. It’s the third annual DiabetesMine Design Challenge. 

Do you have an idea for an innovative new diabetes device or web application? The DiabetesMine™ Design Challenge is your chance to win big, and potentially help transform life with diabetes for millions of people.

Whether you’re a patient, parent, caregiver, student, entrepreneur, developer, engineer, etc.:  if you’ve got a great idea for a new tool to improve live with diabetes, send your submission!”

This year there will be three Grand Prizes of $7,000 plus a consultation with IDEO, a complimentary pass to this fall’s Health 2.0 conference, and expert help as appropriate. 

The contest is open for submissions until Friday, April 29. Check it out. Allison Blass tells me there’s a brand new video for this year’s contest. 

Nice to see also that my fellow blogger, Bernard Farrell, will be one of the many impressive judges. Bernard has been a passionate commentator on all things regarding diabetes technologies. 


The diabetes blog-o-sphere keeps growing

Ann Gann a newbie blogger


 I think I once checked and there must be over 1,000 people blogging about diabetes. Woohoo! I began to notice, literally lift up my head from my computer screen, back in May when Karen at Bittersweet put out a call to bloggers to join for a synchronized week of blogging [yes, something like synchronized swimming ;-)] and more than 150 answered the call.

First, here’s to all of us who do this relentless thing we call blogging. Second, let me say how grateful I am that you visit. If not for you, I wouldn’t be here, and this is the place I feel the full freedom to write pretty much whatever comes into my head, and heart.

Third, I’d like to introduce you to a friend of mine who began blogging a few months ago over at DiabetesSisters, Ann Gann. Ann and I have a lot in common and also not so much. That’s why you might want to give her blog a read. Like me, Ann is a peer-mentor and goes around the country giving educational talks to fellow patients. Unlike me, she has type 2 diabetes, is a grandma, lives in a small town, battles her weight and wears a pump. She’s a calm voice in an often stormy sea.

Ann has also been running a diabetes cable TV program in her township of Anderson County, Tennessee bringing county diabetes educators, dietitians school health coordinators and other local resources together to help the greater population of two neighboring towns. In a matter of weeks she took on being the producer, host, scriptwriter, project manager and coffee-bearer. Ann thinks she doesn’t do anything special, but I think a sixty-something year old retired school-teacher traversing the country to educate others, producing a TV show and writing a blog are kinda special.

I encourage you every once in a while, if you don’t already, to take a spin around the blog-o-sphere. Everyone brings something else to the party. Here’s Bitter-Sweet’s list of bloggers captured that amazing week we all raised our voices. You’ll also find a chorus of voices at alltop.

Then come on back ya’ll, as Ann would say, and we’ll carry on again.

New Facebook game creates a healthier you

Leave it to Manny Hernandez, founder of tudiabetes and estudiabetes, to come up with a Facebook game to help people with diabetes improve their eating and fitness habits. And the gem is, while you’re learning and doing, your ‘friends’ are helping you through it!

The game is called HealthSeeker and was launched June 14th with Joslin Diabetes Center collaborating on content and the sponsorship of Boehringer Ingelheim. Already, there are more than one thousand players.

How it works is you enlist your Facebook ‘friends’ to be your support circle and ravers as you take action steps that help you meet your healthy lifestyle goals. You’ll track your progress and you can share your game results via Facebook status updates and send them out to your Twitter followers.


As Manny, who has been living with diabetes since 2002 says, “I cannot overstate what a source of support, information and inspiration social networking tools like this can be for someone living with a chronic condition like diabetes.”

HealthSeeker™ provides simple action step suggestions and rewards your success through achievement badges and experience points you earn, kudos your friends can send you and comments they can leave on your Fridge door. (Your game Fridge door, that is!)

While your computer is home base, getting away from your computer is where the action happens – in the supermarket, in your kitchen, on the basketball court, in the pool. Then you come back and share your results.

The game is set up so that you choose “Missions” (healthy actions) as in the lingo of the old TV show, Mission Impossible – “Your mission if you choose to accept it….” 

These missions are the stepladder to achieving your goals. As you complete your mission, you move up in the game and get access to more and more detailed action steps where you will need to sharpen your healthy living-chops. For example, if a mission on Level 1 suggests you eat a certain kind of food once a week, later on you will have to do it twice or three times per week – and that’s the beginning of building new habits.

Manny has made going after health fun to give us all a helping hand to improve our diabetes management, and our life. Further, the fun of playing the game with hundreds of others, scoring yourself, seeing yourself gain more points and sharing your results, may be just the motivation you need to now get in the game. 

So get online and then get out on the field! There’s nothing holding you back now but you.

Way to go Manny!

Vancouver-based social game development group, Ayogo Games, Inc. developed the game code.

The Diabetes Resource web site

What’s a blogger to do when she’s going to be away for a few weeks and can’t post except from home? Well, one thing is I’m working on solving that problem, but not in time for the next three weeks I’ll be away. So, I will leave you with this post and the next that give you something to do. Of course, you have to promise to come back the end of the month.

Take some time to check out my fellow blogger, Gina Capone’s, fabulous new web site, The Diabetes Resource. This one-stop, convenient and easy to navigate site covers everything related to diabetes; from camps to monitors…professionals to articles and chats, and it is updated daily. Remarkably, this is the only site that puts the whole spectrum of diabetes resources in one place. 

Check out:

1. A directory of everything under the sun related to diabetes, i.e. magazines, pregnancy, celiac disease, dieting, diabetes drug companies, home delivery services and on and on and on and on…………..

2. Events happening in your neighborhood and around the country

3. A chat room every Wednesday night

4. Great articles 

5. Advertising

“I developed The Diabetes Resource to take the hassle out of searching the web and navigating site after site to get the critical information you need when you need it,” said Gina, herself a type 1 since the age of 25. “I tried to think of everything I could that related to diabetes and then brought those resources together at one location, one web site.”

“The Diabetes Resource is the first web site dedicated solely to consolidating and bringing organization to all of this information and I welcome that,” said Kitty Castellini, Founder and President of Diabetes Living Today™, a popular radio program dedicated to discussing issues pertaining to diabetes.  

So, take a look. It should keep you busy and allow me to feel less guilty.

A strong chorus of voices, amid others, in the diabetes community

Screen Shot 2015-02-08 at 12.17.32 PMIt is now a few days since I’ve returned from the Roche Diabetes Care Social Summit and my inbox has been flooded with daily bursts from enthusiastic returning bloggers. There’s the sharing of all our blog posts as almost 29 people blogged about the conference, of course. And there’s everyone’s vote winging back and forth on the T-shirt in the works that Chris immediately went to work on to commemorate, I think not so much the working summit, but all of us meeting. 

I’ve been flickered, tweeted, googled and just learned what (#) means. I used to think it stood for “number” but apparently I have been sleeping through the past several nanoseconds. It’s a “hashtag,” a way to combine tweets on the same topic. But you knew that, didn’t you?

This email below came in today from one of my fellow bloggers at the summit and I had to smile reading it as it reminded me that while for a few hours we were heralded as the Diabetes “A” Team, we are all only figuring it out ourselves as we go along, every day, day by day.

A quick note to those of you on the bus from the (Roche) factory to the airport. I didn’t realize it at the time, but I was having blood sugar issues on the ride. All I remember was a lot of talking and laughing. By the time I got to the gate, I was confused and didn’t know where I was. The next thing I knew, I was lying on the floor staring up at a group of airport employees, who trying to figure out “who is this crazy man, and why is he sleeping on my floor?” (I’m sure they thought I was drunk) After I muttered the word “diiiaaabetiiic”, a nice lady from behind the counter gave me some OJ. When I checked my blood, I thought my meter was malfunctioning. It read 38. I checked again, and my hypo event was confirmed. So…if I displayed any anti-social behavior on the bus, please forgive me.”

For those of you who’d like to read more accounts of this unprecedented event that Roche created here are a few of the many:

My Spin on the Roche/Diabetes Social Media Summit

Wait, You Wanted Pictures??

Roche Hosts Diabetes Care Social Media Summit – A Meeting of the Minds

Roche Diabetes Social Media Summit: My Turn

Diabetes Social Media Summit: my thoughts

As you’ll notice we all represent a wide range of personalities, interests, opinions, activism, but with one central tenant: We all share living with diabetes in an attempt to help others and also help ourselves. Below my fellow bloggers’ photo are all their web blogs.


  1. That would be me
  2. Ginger Vieira
  3. Kelly Kunik
  4. Fran Carpentier
  5. Calpumper
  6. Kitty Castellini
  7. Sandra Miller
  8. Christel Marchand
  9. David Edelman
  10. Brandy Barnes
  11. Bennet Dunlap
  12. Lee Ann Thill
  13. Allison Blass
  14. Gina Capone
  15. Jeff Hitchcock
  16. Kerri Morrone
  17. Manny Hernandez
  18. Chris Bishop
  19. Amy Tenderich
  20. Kelly Close
  21. Christopher Thomas
  22. Scott King
  23. Bernard Farrell
  24. Scott Strumello
  25. George Simmons
  26. Scott Johnson
  27. William Lee Dubois
  28. David Mendosa
  29. Charlie Cherry

(A special thanks to Sandra Miller for typing up this list.)