Amy Tenderich is a journalist/patient blogger who started DiabetesMine.com after her diagnosis with type 1 diabetes in 2003.
She advocates on many fronts for people with diabetes, daily empowers e-patients and her site is one of the top health blogs in the world.
I interviewed Amy some years ago and blew my only interview due to digital recorder (alright, operator) failure. She was gracious enough to let me interview her again.
This is the eighth in my series of profiles on diabetes change leaders.
Q: How did you discover you had diabetes?
Amy Tenderich: It was just a few months after the birth of my third daughter. I had lost nearly all my pregnancy weight and was delighted -- and fairly exhausted. I was fitting into my favorite jeans and my husband was joking with me about my girlish figure.
But I noticed my vision going blurry and I began feeling parched and famished all the time. I also had to run to the bathroom every 10 minutes! Meanwhile, the weight loss became exponential. I would wake up in the morning skinnier than I was the day before. Then I knew something was wrong. I landed in the hospital for a week completely dehydrated and depleted and close to falling into a coma.
Q: How did you and your family respond to your diagnosis?
AT: I was completely shocked. Although my father had type 2 diabetes and I had been told late in my pregnancy that I had "borderline" gestational diabetes, it never occurred to me in a million years that I could develop this life-threatening form of "juvenile" diabetes.
My husband was my anchor. He immediately said, "We'll tackle this together." He supported my full range of emotions from my bawling on his shoulder, to shouting out in anger, to my fierce determination to conquer this thing and not let it ruin the pleasantries of our lives.
Q: What made you start DiabetesMine.com?
AT: Suddenly my life became all about poking my finger for blood glucose tests a dozen times a day, injecting insulin at least six times a day, and constantly worrying about food, my activity level and how all of this affected my glucose readings. The doctors had me on far too much insulin at first so I was having severe lows after every meal. I thought I was experiencing a nervous breakdown!
I felt overwhelmed and intensely alone so I went looking for some "real-life" advice and for other patients to connect with online. But in 2003 all I could find was a dizzying array of medical journal articles and bad-news headlines -- almost all of them incomprehensible for a new patient like me. Where were the other people living with diabetes?
I decided that with my background as a journalist I could perhaps create my own version of a place for patients on the Web -- essentially the site that I myself was looking for. Fortunately, new software had just been introduced allowing anybody to create an online journal.
I called the blog DiabetesMine as a play on words, "Diabetes is mine, I'm stuck with it" and the notion of "a gold mine of straight talk and encouragement for people living with diabetes." I've been astonished (blessed, even) at the following it's gained.
Q: What are you most passionate about and where besides DiabetesMine are you leaving your footprint?
AT: Recently I joined Alliance Health Networks as V.P. of Patient Advocacy. Now there's a title that reflects a new paradigm! I am passionate about empowering patients. Alliance has built a Facebook-like online community called DiabeticConnect.com which I've been involved with for several years.
One thing that's really useful about DiabeticConnect, in addition to the features, recipe and book reviews, are the product reviews. Patients get to rate diabetes items like they might rate shoes or household items on Amazon.com. Where else can you find that kind of real-world input from patients on medical tools?
I also launched, a few years ago, an annual diabetes innovation competition that has sparked national attention about the need for better-designed medical devices that actually fit into people's lifestyles. It's called the DiabetesMine Design Challenge.
This year we're offering $25,000 in prize money for the best new concepts for tools, devices or web applications that improve life with diabetes. Tools that would be most helpful, most comfortable and most appealing for our day-to-day lives with this illness. We welcome anyone who's got an idea be it a patient, parent, caregiver, student, entrepreneur, health care provider, designer or engineer.
The reality is that only a handful of design firms design around "human factors." Most have no idea how to get the patient perspective.
In addition to our Design Challenge, next fall DiabetesMine.com and IDEO, one of our Design Challenge partners, will be holding a Diabetes Innovation Summit. It will bring together patient advocates and medical device designers.
Q: What do you consider your mission?
AT: My personal mission is to do my very best to help educate and connect people, lobby for the best tools and treatments and generally be a conduit of information and assistance between diabetes patients and the powers that be (medical establishment, pharmaceutical industry).
Q: What do you see as the power of social media and where do you see it going in five years?
AT: The power of social media for people living with chronic health conditions is that it adds the "human factor" to our health care system, which is something pharmaceutical companies and health insurers can't provide -- and doctors and nurses just don't have the time for.
Through social media we're able to connect with each other and enjoy an ongoing source of emotional support and camaraderie, education and shared information, and a platform for grassroots advocacy. Plus patients have a collective voice they never had before.
Where it will all head in the next five years, I wish I could tell you. Things change so quickly in the Internet world!
Q: Is the online diabetes community different than other online communities?
AT: I personally believe that blogs and online social networks are practically tailor made for the needs of people with diabetes. Diabetes is such a unique disease. It's chronic yet largely controllable by the patient with a lot of work and perseverance.
The biggest issue most of us face with the challenge of our 24/7 self-care is isolation. Most of us at some point feel desperate to talk with someone who "gets it." There's also the issue of staying motivated day-in and day-out, all to prevent some far-off goal of not going blind one day! With blogs and social networks we can reach out to each other and share information and support in a much richer way than we ever could before.
Q: What's your opinion about the type 1 vs type 2 divide?
AT: I think it's unfortunate that we sometimes snipe at each other. As Jeff Hitchcock, founder of ChildrenwithDiabetes.com, likes to say, it's diabetes that's the enemy, not this group or that group. The end-game is the same for all of us so I hope we can find ways to work together to make life better for all of us.
Q: What would you like to see policy makers do differently regarding diabetes?
AT: The single most important goal ought to be transforming our system from a "sick care" system that pays primarily for treatment of acute events like dialysis and amputation to an actual "health care" system that invests in disease prevention and education. Seems like a no-brainer, doesn't it? But I realize it always boils down to the financial incentive issue. The question of who pays and why?
Q: What would you like to see medical device makers do differently?
AT: Despite all the talk about making things "patient-centered," it seems there really are no established 'best practices' for achieving patient involvement in the design process of products for chronic illness care.
Typically companies create something very clinical or engineer-driven and then pay lots of money to set up "focus groups" where they fill a room with patients, give 'em the gadget and just watch what buttons they push. That's a pretty backwards way to go about it.
Patients need to be involved in conceptualizing their own tools. This is of course the whole drive behind the DiabetesMine Design Challenge. We're sourcing ideas from people who actually use the tools.
Q: You're such a knowledgeable patient, is there anything you struggle with having diabetes?
AT: The never-endingness of it. And the fact that I have to constantly discipline myself to "behave better" than all the non-diabetics around me who can eat and exert themselves anytime they want, freely. I wrote a post about it recently called "Losing Control." It's about my biggest frustrations of late!
Q: How do you get through the tough days?
AT: I try not to beat myself up. On some tough days I try to "take a step back," recognize that I'm having a bad day and give myself a little break or a non-edible treat of some sort, like maybe getting my nails done or taking a walk in the woods. Other days I just tell myself, "You'll just have to write this one off!" and know that I will start fresh trying my best the next day.
Q: Do you find anything positive about having diabetes?
AT: Without a doubt it's the people I've met. Passionate, exemplary, fun people who are pushing through this disease to accomplish amazing things. I've met diabetic Olympians, rock stars, authors, artists, adventure-travel experts, acrobats -- you name it -- and also scores of lovely "ordinary" people like me who manage their diabetes with grace and compassion.
I often find myself saying, "If I just had this stupid illness and didn't have my online diabetes world, now that would be a bummer!"
Diabetes has also opened a world of opportunities to me including the chance to co-author a book a few years ago called "Know Your Numbers, Outlive Your Diabetes" with Dr. Richard Jackson of Joslin Diabetes Center in Boston. He's become a close friend of mine.
Q: Could you have imagined when you began this work that a patient could be so influential educating other patients and influencing product manufacturers and policy makers?
AT: I'm just astounded to think that one sick mom in California could reach out to so many fellow patients, create a community, and actually turn the whole thing into a business.
It's helped me feel less alone and less frightened about living with diabetes, given me a purpose in life and I'm thrilled to have found myself at the center of an enormous army of increasingly well-informed patients.
Together we're challenging the traditional model of health care in this country.
With free access to all sorts of medical information and by asking the right questions and demanding the latest and greatest drugs and devices, patients can drive our own care for the first time in history. We can end the stranglehold of doctors and health insurance companies on information and treatment options.
Q: What's the single thing you haven't yet done that you'd like to?
AT: I want to do many things. I want to travel to lands I haven't seen, watch my kids grow up and dance at their weddings, train for a Century Ride and actually finish it. In the diabetes world, I'd like to attend Diabetes Training Camp one day and live to tell the tale!
Riva is the author of "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" and "The ABC's Of Loving Yourself With Diabetes." Visit her web site diabetesstories.com.
Follow Riva Greenberg on Twitter: www.twitter.com/diabetesmyths