TuDiabetes.com, the social networking site for "People Touched by Diabetes", was started two years ago. It is a very active community with over 7,000 people and it grows at the rate of 15% every month. At this stage, TuDiabetes has members all over the world.
I asked the founder, Manny Hernandez, what most surprised him since he started TuDiabetes. His answer? The number of people with diabetes who have never met anyone else with diabetes and who have no support group of folks with diabetes.
You only need to spend a little time on the TuDiabetes.com site to realize how much support and sharing goes on there are all hours of the day. People have an opportunity to create groups such as Pumping Our Insulin or Diabetes and Women. TuDiabetes also has an events section where members can organize meetups, or let other members know about upcoming diabetes-related events.
I only wish that more people with diabetes knew about this great resource. If you have any friends or family with diabetes, please spread the word and get them to take a look. It might help them really change how they view living with diabetes.
In the last week I've read two different sources on social networking (AKA health 2.0). Together they beg the question: will your health improve if you use social networking to become part of a larger community?
What is social networking?
According to the Health 2.0 blog, it's "the use of social software and light-weight tools to promote collaboration between patients, their caregivers, medical professionals, and other stakeholders in health".
For me, this means sites like TuDiabetes.com, DiabetesDaily.com, and others. It also means using Twitter to keep in touch, or even sharing photographs (see Diabetes365) with friends who can help you maintain better health.
The first source was an article in Business Week magazine Health 2.0: Patients as Partners talks mostly about PatientsLikeMe and how members there are sharing details on their medical conditions to try and determine better ways of treating them. It points out
PatientsLikeMe and a proliferation of similar startups are building a new business predicated on the belief that the wisdom of crowds of patients will bring insights, solace, and most of all, power.
Power because, as it turns out, patients talking among themselves on a global scale with complete transparency produces all kinds of unexpected results. Drug side effects can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies can use social networks to recruit subjects quickly for clinical trials, speeding up the pace of research. For that matter, patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of the loop.
Do social networks bring about positive behavioral change?
Is there a role for insurance companies in this conversation, or is this level of mis-trust so high that they should just stay out?
My experience after many years with diabetes is that anytime several people get together to share experiences and frustrations we all benefit from it.
These may be small things, like suggestions for exercising while on insulin, or using new sites for placing an insulin pump infusion set, or testing blood sugar.
But engaging with others who are going through the same health challenges can produce much bigger results like: persuading Disney to pull an episode of Hannah Montana because of how it portrays life with diabetes; or changing laws to help protect the rights of those using insulin to drive or pilot planes.
What's your experience with social networking sites?
Have they helped you improve your diabetes control, or your quality of life with diabetes? Which sites have helped you the most? What is missing from these sites?
And if you have found some that work for you, do you think you'll continue to use them?
If you're a regular reader of this blog, you've probably seen some references to TuDiabetes.com. Have you visited this awesome social networking site? It's an amazing resource for folks whose lives have been changed by diabetes. So if you have diabetes, any type of diabetes, or you have a family member or good friend with diabetes, this is an excellent place to join.
My good friend Manny Hernandez started TuDiabetes in March of last year, it now has almost 4,400 members. They support each other in various groups, sometimes get together at organized events and generally share information and help each other live better with diabetes.
If you understand the importance of work like this, now is a good time to support TuDiabetes and its work. Recently Manny started the Diabetes Hands Foundation and he's trying to put together a fund that will enable the foundation to work in a more direct way for folks with diabetes. If you can spare even $10, that would go a long way towards helping them reach their goal by the end of September.
While you're at TuDiabetes, check out their Word in Your Hand competition. They're looking for photographs of your hand with a single word on it that captures how you feel about diabetes. Check out the winners from last week, there's a lot of creative folks out there.
Then think about entering one of your own pictures in the competition. All of us with diabetes need a hand, and yours could be one of them.
While not directly related to diabetes, the New York Times posted an article Doctors and Patients Start Talking that points to a new series being written by an oncology doctor, Dr. Pauline Chen. She is the author of Final Exam: A Surgeon's Reflection on Mortality. I have not read the book, but there's a huge amount of discussion on her article at the NYT site.
Those of us with chronic illnesses understand the importance of good, honest communication with our healthcare team. Some doctors and nurses aren't good at that, others don't have time to really explain things or answer questions. So we turn to help from folks on TuDiabetes.com and other supportive sites. I think this is part of how healthcare is evolving in the US. What do you think? Maybe you can leave a comment on the NYT site.
While I'm talking about reading, here's a free book that may be really useful if you're dealing with the US healthcare system. I just started reading My Healthcare is Killing Me! earlier today and I've already got some ideas for better handling myself within our (sometimes challenging) system.
Finally, if you're one of many of us who'd like to see insurance coverage for CGM devices, please go and sign Gina Capone's petition. If you'd like to know more about Gina and the petition, read Amy's interview with her.
I know that I've been very quite on the blogosphere for the last several weeks. I appreciate more than I can express all the comments and e-mails asking me how I'm doing and wishing me the best.
I won't bore you with the details here except to say that I'm in the middle of some type of depression. It's not earth-shattering and for those of you who have diabetes, it's probably not entirely unexpected. Taking care of a chronic disease is a big burden and it takes its toll. The good news is that I'm working pro actively to get this under control and get through it. And in the meantime I'm focusing on essential activities because I've not got a whole lot of energy for other things.
It's been a busy year on the blogosphere and busy one for me. I've been blessed with a lot of accomplishments over the last year, in no particular order:
I met Allison and Mel in Boston. It's always fun to get together with fellow diabetics! If you're going to be near Boston in 2008, please let me know.
I got to some meetings of the insulin pumpers group that meets in Woburn, MA each month. A fun, supportive and informative group. Every state should have a group like this.
I marked my 35th year with diabetes by raising over $11,500 for research in a diabetes bike ride. Hint: it's not too late to support this.
I received an award from Lilly and Joslin for 25 years with diabetes. Thanks Dr. Spatola for organizing this one.
I setup the diabetes search engine. It now indexes over 800 sites and I like to think that it's helpful for folks.
I joined the great TuDiabetes.com social networking site for diabetes. Big kudos to Manny for starting this.
I worked together with Beth to start the diabetes365 project (originally her idea). As of today there are about 1,750 photos that give some insight into what it's like to live with diabetes.
I almost completed NaBloPoMo for this year. I didn't post for every day of November. Next year will be better.
I started using the Dexcom STS continuous glucose monitoring system and moved to the Dexcom SEVEN system later in the year. Life with a CGM is a lot easier, though it still has its frustrations.
And of course I posted many blog entries. Along the way I hope that I informed some readers. I know that I learned a lot from your comments and I also managed to get lots of practice with my writing skills.
So what's in the cards for 2008?
I'm getting some blood drawn in January as part of the research for Dr. Faustman's work on a possible cure for Type 1 diabetes. No, I'm not getting an early version of the cure, I'm just donating blood samples for the work. I hope to meet her and ask a few questions, I'll let you all know what I learn.
I'll keep blogging, though maybe a little less.
I hope to get involved in another fund-raising bike ride in September.
World Diabetes Day only a few days away. And I think this is the high point of National Diabetes Month for me.
You've possibly seen these links on other blogs, but just in case.
Allison of Lemonade Life has opened the voting for 3rd Annual Diabetes O.C. Awards. So get over there and vote for your favorite diabetes blogs and resources. Read's Allison's blog post for more details.
Manny of TuDiabetes fame has posted the video that was created from the submissions for the word in your hand project. It's a thoughtful video that helps people understand what it's like to live with diabetes, and it's worth watching.
It's produced so that it contains less digestible carbohydrates, so you don't need as much insulin when eating it. Here's what they say on their website.
Dreamfields Pasta has largely the same level of durum semolina as traditional pastas, with a low level of our unique blend of fibers and proteins and no soy fillers. The Dreamfields approach means fewer carbohydrates get digested that will increase blood glucose response. So you get the authentic taste and texture you expect from pasta, but with only 5 grams of digestible carbs. Dreamfields also contains twice the fiber of regular pasta, including a special fiber called Inulin that has been shown scientifically to promote digestive health and support a healthy immune system, while enhancing calcium absorption for strong bones and teeth.
I spotted a box in my local supermarket. First thought, it's expensive - about 4 times as much as box of similar regular pasta. So when we next had pasta at home, I just cooked myself one portion of Dreamfields. It tasted pretty good and definitely gave me a smaller spike. So I'll be using it sparingly in the future in place of regular pasta.
I've had diabetes for over 35 years, and it's really taught me about the value of endurance. Even though my pancreas is broken I'm still remarkably healthy. The insulin that I inject helps my body to absorb and process carbohydrates but it's not a cure for diabetes. Despite the continued high and low blood sugars I'm blessed by God with very few complications.
My hope and prayer for me and others with diabetes is that we all endure until a true cure is found for this expensive and deadly disease.
Are you planning on doing something for World Diabetes Day? If so, you've got about a month. Get your thinking hats on.
Surprisingly only about half of those with chronic illnesses (including diabetes) actually use the internet. But when they do find the internet, and the information they can get from it, they become 'avid' users. For those of use who read diabetes blogs, are members of TuDiabetes.com, and use resources like the diabetes search engine, or diabetes daily this must be surprising news.
The report is based on a survey of nearly 3,000 adults taken in August 2006. It defines E-patients with chronic conditions as "Internet users who have identified themselves as living with a disability or chronic disease and who search online for information on health and health care". And this group of people with chronic illness are empowered by what they find on the internet. According the published findings
75% of e-patients with chronic conditions say the information they found in their last search affected a decision about how to treat an illness or condition, compared with 55% of e-patients who report no disability or illness.
69% of e-patients with chronic conditions say the information led them to ask a doctor new questions or to get a second opinion from another doctor, compared with 52% of other e-patients.
57% of e-patients with chronic conditions say the information changed the way they cope with a chronic condition or manage pain, compared with 36% of other e-patients.
56% of e-patients with chronic conditions say the information changed the way they think about diet, exercise, or stress management, compared with 42% of other e-patients.
I think the numbers are interesting but the overall findings aren't too surprising. I've previously blogged about the importance of taking more control of our own health care. I think I'm pretty informed about diabetes, but since I started blogging in August 2006 I've found many better ways to deal with this disease and improve my overall control. Sites like TuDiabetes.com and the connections that I've made there have been invaluable.
I hope the news about this report gets out to a wider audience. And ultimately leads more people with chronic illnesses to the internet and to better outcomes and quality of life.
Maybe you've some anecdote to share that helped you in the early days of diabetes. Or you just want to celebrate the amount of time you've lived with this disease.
Whatever your reason, please consider joining the Diabetes Veterans group and letting others see how we've managed to make it this far.
Lea is a new blogger and I really love her blog name, Candy at Midnight. Please go say hello to her.
We're so fortunate to have the blogosphere as a resource to help us learn about diabetes.
Between the OC Diabetes community and newer sites like TuDiabetes, there are just lots of places to connect with folks who have diabetes.
If you have diabetes and you've never been able to meet up with another person with diabetes jump into one of these places and start commenting.
On TuDiabetes, we now have a US Northeast group. If you live in one of those nine states, please do join up. I'd like to see if we can maybe have a bloggers get together later in the year.
The Diabetes Technology Blog is focused on using technology to live life to the full with diabetes. I review new diabetes technology including: blood glucose monitors; continuous glucose monitors; blood sugar meters; diabetes software and living with diabetes.
About Me
Name: Bernard Farrell
Location: Massachusetts, United States
I was born in Ireland and now live in the US.
I have had Type 1 diabetes for over 36 years. I struggle with my blood sugar, the same as most people with diabetes.
I wear a Cozmo 1800 insulin pump and a Dexcom SEVEN Plus CGM to track my blood glucose levels.
I'm blessed by God, and every day brings the possibility of a cure.
You only need to spend a little time on the TuDiabetes.com site to realize how much support and sharing goes on there are all hours of the day. People have an opportunity to create groups such as Pumping Our Insulin or Diabetes and Women. TuDiabetes also has an events section where members can organize meetups, or let other members know about upcoming diabetes-related events.
These may be small things, like suggestions for exercising while on insulin, or using new sites for placing an insulin pump infusion set, or testing blood sugar. 
