Moderated by Allison Blass
JDRF is introducing a new round table series with nine bloggers in the online diabetes community. They all have different backgrounds, were diagnosed at different stages in life and have different styles of managing their diabetes. Scott Johnson, Bernard Farrell, and Kerri Morrone were all diagnosed as children and are insulin pump users. Allie Beatty and Scott Strumello were also diagnosed as children but currently use multiple daily injections. Manny Hernandez, Amy Tenderich, and Gina Capone were all diagnosed as adults. Sandra Miller has a son with diabetes who was diagnosed three years ago and is on an insulin pump.
You’ll get to hear their experiences with the disease, their opinions on technology and their thoughts on new research. For the first round table, the bloggers are discussing their experiences with blogging and social networks and how it has impacted their life with diabetes.
How did each of you get involved in the online diabetes community?
Scott Johnson: I wanted a place to tell my story. Living with diabetes for me is a tangled swamp of emotions, blame, guilt, and shame, with little bits of accomplishment and success mixed in. I needed somewhere to work through those feelings. I also wanted to have some record of significant events as they happened.
Allie Beatty: In September 2006 I issued a press release for a site I started that uses online shopping sales commissions to fund Dr. Denise Faustman’s research with type 1 diabetes. Shortly after I issued the press release, I was offered the job to post on AOL’s The Diabetes Blog.
Bernard Farrell: Initially to raise funds for a type 1 cure, but I quickly realized that there was a lot to learn and to contribute to the community at large.
Gina Capone: It started when I was diagnosed with diabetes in November 2000. I was searching the Internet for support groups and I joined a diabetes support group, and then decided to start my own.
Manny Hernandez: Through the foundation of TuDiabetes.com. Prior to it, I had been a blogger since 2002, but touched on diabetes in my blog only every so often.
Amy Tenderich: Like most of us at the time of diagnosis, I felt terribly alone and utterly overwhelmed. At the time, late 2004, the Internet offered nothing but a dizzying array of formal medical documentation and “bad-news” headlines. Patients had a very limited presence on the Web (chat and message boards), and nobody was reporting from the heart on what it’s really like to live with this volatile disease. So I set out to create the diabetes site that I myself was looking for as a patient.
Scott Strumello: I had hosted a number of online chats on DiabetesStation.com with such people as James F. Battey, the chair of the NIH Stem Cell Unit Steering Committee, author Beth Finke, and others. I also wrote some articles and editorials for Insulin-Free TIMES. Not only did I enjoy the research I put into those articles and chats, but I wanted to continue even after the moderator decided to retire Diabetes Station. Rather than relying upon a third-party publication, I decided to blog…the ultimate in self-publication!
Kerri Morrone: I started my blog, “Six Until Me” in May of 2005 because I was tired of Googling “diabetes” and coming up with little more than a list of complications and frightening stories. Where were all the people who were living with this disease, like I have been since I was a little girl? Was I the only diabetic out there who felt alone? I couldn’t find what I was looking for online, so I started my own blog.
Sandra Miller: My participation in the online diabetes community grew out of three things: the need to reach out, to connect with others who could understand what we were going through; a search for information about insulin pumps; and a strong desire to tell our story. We knew no one else who had the disease; and, because I was a stay-at-home mother, opportunities to meet others in our situation were rare.
How has blogging influenced your life since you started?
Scott J: There is a vast array of people in the OC (online community), from all walks of life. Someone, somewhere, has something to offer on what I ask about or share. Being that it is the Internet though, I have to keep in mind that the person offering the advice may not know much about it, and is (usually) not a medical professional. The OC does not replace your diabetes care team; it supplements them!
Gina: I have met so many online friends that I talk to in instant messenger on a daily basis. They have also helped me through some tough experiences. It was much easier getting help from a person that has actually gone through the same sort of problems than hearing it from a doctor or family member that doesn’t necessarily “get it.”
Kerri: I am no longer “the only diabetic I know in real life.” Also, as a result of writing Six Until Me, I have been hired as an editor and columnist for the diabetes media company, dLife, and am currently finishing my first book. But the community that I have come to know and respect means more to me than any accolade or employment opportunity. These people make the diabetes burden so much lighter.
Sandra: This online community has taken me out of isolation–it has been a conduit for support when I’ve needed it, while at the same time, provided me with both the opportunity and the means with which to support more families than I could have ever thought possible.
What has been a memorable experience in being part of the online diabetes community?
Allie: Among the memorable experiences with the online diabetes community, I have to express how flattered I was when Kerri interviewed me for Six Until Me. It was early in my blogging career, and I was so excited that she even knew my name! So, hands down, my interview with Kerri was a memorable experience worthy of mention. Thanks, Kerri!
Sandra: The experience that comes to mind right now is participating in the very first “D-Blog Day.” In honor of Diabetes Awareness month, and as a show of support for one another and our readers, all diabetes bloggers agreed to post en masse on November 9, 2005. Not only did every blogger post, but people commented in huge numbers. Many readers (who might not have done so otherwise) became bloggers that day. I think that was the first time I realized we were part of something big.
Bernard: Getting contacted by people I’ve never met and asked to do diabetes-related work for them. I’ve written a paper for a diabetes-related journal and done some small bits of consulting for diabetes device companies.
Amy, last year you wrote an open letter to Steve Jobs on your blog. What was that all about?
Amy: In April 2007 I penned an “Open Letter to Steve Jobs,” which reverberated around the mainstream media and blogosphere. It was a rally cry to apply the principles of “super-cool” consumer design to the medical devices that people with diabetes live with 24/7. A short time later a San Francisco design firm picked up my challenge, and designed an iPod-inspired prototype, the Charmr, that takes insulin pump/glucose meter design to the next level. The design firm is now negotiating with several manufacturers on how to make the Charmr, or something very like it, a reality.
Sandra, from a parent’s perspective, why might blogs be especially useful?
Sandra: It’s hard, raising children. But thankfully, we’re not alone. When we become parents, finding a community of people who’ve been there or are in the thick of this very same experience (parenting a child) is not hard. Now, what about the parents of a child with diabetes? At diagnosis, they come home from the hospital, and like the parents of a newborn, are overwhelmed by all they must learn in order to care for their child. As that child grows, new challenges specific to their diabetes must be faced. These parents need a place where they can unload at length about themselves, their children, their fears–a place where they can go to hear stories from the trenches and where mutual support is a given. Blogs written by those who have the disease or are parenting a child with diabetes are beneficial because they provide parents with such a place.
For someone who doesn’t know a lot about diabetes blogs or social networks, what tips or suggestions do you have for starting out?
Manny: There is a world of opportunity and millions of great people faced with challenges similar to yours. You can learn from them and they can pick up from your experience, so don’t keep things to yourself. There’s nothing to hide. We need to get out there. If it feels overwhelming at first to go at it solo, join a community like TuDiabetes, but whatever you do, don’t hold back.
Amy: In general, when surfing, the main thing to watch out for is who’s behind the site you’re looking at. The individual author or organization should clearly identify themselves. If they don’t, the site could be just a front for selling something, or diverting Internet traffic to other advertisers. Also, does the site require you to register? All social networks like TuDiabetes and DiabetesTalkfest will legitimately require registration, but most blogs shouldn’t. For a credibility check on organizational Web sites, look for the HONCode logo, an accreditation from the international, non-profit Health on the Net Foundation. On blogs, look for the medblogger code, a grassroots code of ethics for health and medical bloggers.