In the â€œwhoâ€™s whoâ€ of diabetes advocacy, longtime type 1 and fellow blogger Melissa Lee is certainly someone who should be on the shortlist of people in our community to know about.
Diagnosed as a kid with type 1 more than a quarter-century ago, sheâ€™s from the the Dallas, TX, area and has worked professionally as a private voice lessons instructor. Of course, many of us know her best through her D-Advocacy efforts that include blogging at Sweetly Voiced, her leadership roles with Diabetes Hands Foundation, and eventually going into the commercial product side with Bigfoot Biomedical and now open-data organization Tidepool. We also canâ€™t not recognize her incredible husband Kevin, who is a brilliant engineer whoâ€™s done some #WeAreNotWaiting work through the years and currently works at Bigfoot himself.
Weâ€™re proud that Melissa has in the past been a two-time selected winner of our annual Patient Voices Scholarship Contest, attending our annual Innovation Summit in California. She never hesitates to speak her mind and raising her voice for the betterment of our Diabetes Community, and today weâ€™re thrilled to feature her story here at the â€˜Mine.
Talking with Diabetes Advocate Melissa Lee
DM) First of all, can you recap your diabetes story for those who donâ€™t yet know you?
ML) I was diagnosed in 1990 at the age of 10, in a coma from DKA (diabetic ketoacidosis). I spent the â€™90s on multiple daily injections with A1cs between 10 and 16 and started on an insulin pump in 2000. In 2008, newly married and desperate to have the kind of control necessary to have a safe pregnancy, my husband sent me to a link to DiabetesMine and, from there I discovered the Diabetes Online Community. Since discovering community support (and with it, so much information), Iâ€™ve managed to maintain an A1c in the 5-7% range for the last 6 years and I have two beautiful children. Iâ€™m now an advocate for people with diabetes and a much more informed patient than I used to be.
This will be your second time at the Innovation Summitâ€¦ what did you get from the 2013 event?
That yearâ€™s Summit was quite a turning point for me. Though Iâ€™ve always been vocal (in more ways than one), it wasnâ€™t until the Summit that I realized just how much the patient voice had been missing from some sectors of the diabetes sphere. The Payers Panel with insurance executives discussing their specific challenges and concerns was â€” as anyone who was there will recall â€” enlightening and (ahemâ€¦) contentious. I was among a handful of rabble-rousers who found they had quite a bit of perspective to share. It was an amazingly heartfelt, candid open forum and I will never forget the conversations that came out of that opportunity, including the one I had on the long flight home to Dallas seated next to one of those very same insurance executives!
Youâ€™ve been pretty active in the Diabetes Hands Foundation, especially in the past yearâ€¦ what prompted that?
When I left the Summit last year, I started a campaign to raise money for the Diabetes Hands Foundation, walking 50 miles in five weeks and producing some music videos along the way. I believe passionately in their mission that no one with diabetes should ever feel alone. I spent nearly 20 years doing this all alone and my control suffered â€” not to mention my spirit. I will take over the role as Chair of the DHF Board in 2015.
Melissaâ€™s first video, Treat More Moderately
Melissaâ€™s second D-Parody video sung to a popular tune from the animated movie, Frozen!
Sheâ€™s also released this parody, So High Today, based on the song â€œSo Far Away.â€
Fun stuff, and what a voice! What else have you been up to?
Besides my work for DHF, Iâ€™ve also been doing some writing for A Sweet Lifeonline magazine, syndicating some work for Diabetes Daily, and I occasionally even get a chance to write at my own blog Sweetly Voiced. Iâ€™ll also soon be launching a new blog focusing on the challenges of raising a child with Celiac Disease and Sensory Processing Issues.
What do you thinkâ€™s changed in the D-tech landscape, since the last Summit?
The established device companies arenâ€™t too far behind, either. The announcements from companies this summer have been groundbreaking and somewhat surprising â€” companies announcing partnerships with Tidepool, open API, next- gen devices with interoperability, etc. It is an exciting year to be following diabetes technology.
Have you any personal experience with #WeAreNotWaiting or diabetes data hacking?
My husband Kevin designed his own app that sends push notifications to his Android devices and alerts him at work with my CGM information without a lot of the extra steps required by the current popular versions. He says that app is compatible with the work the CGM in the Cloud group is doing, and itâ€™s designed to complement it. It fills a different need. Watching him (and all of these parents and patients) put their coding skills to work to open up how I retrieve my data has been inspiring.
How do you think all of that will influence this yearâ€™s Summit?
Last year, it seemed as though the device companies were shifting in their seats a bit, worrying about what we might do as patients with this unprecedented access to their protocols, worrying about intellectual property rights, FDA, competition. This year? I think everyone will be bubbling over wanting to talk about the progress that has been made on each front. Each company will be eager to declare how theyâ€™ve opened their access for patients and providers. I expect it to be a different â€” and positive â€” conversation.
This is so great, Melissa! Thanks for being inspired to participate again. Stay tuned next week for an interview with our other returning patient advocate, Christel Aprigliano!
This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.
Read more on: diabetesmine