Congrats again to the winners of our 2014 DiabetesMine Patient Voices Scholarship Contest, announced earlier this summer! Over the next weeks, we’ll be featuring an interview with each of them — all leading up to the 2014 DiabetesMine Innovation Summit set for Nov. 21 at Stanford University. That’s our signature invite-only event bringing together patient voices with industry, regulatory, clinical and D-technology leaders. All in the name of fueling innovation, especially in these times of #WeAreNotWaiting excitement.
Our winners each created a video review for the new DiabetesMine Test Kitchen, and we’re hoping those will inspire others to share their take on various products aimed at improving life with diabetes.
First up here is longtime type 1 and fellow D-blogger Sarah Kaye, who lives in South Carolina and many will recognize from her Diabetes Online Community (DOC) pen-name, Sugabetic (derived from ‘the Suga’ — as they call it in the South).
Diagnosed about 26 years ago as a young girl, Sarah now works as an insurance agent while also attending school for a leadership and management degree. Sarah reviewed the Tandem t:slim for the Test Kitchen, illustrating her passion to make sure device makers know what issues matter to us patients. Most importantly in her world, though, is her baby boy who was born in July 2011! Thanks to Mike for pulling together this Q&A with Sarah:
DM) How did diabetes come into your world?
SK) I was diagnosed at 4 years old, on 11/22/1988 (weird date, huh?). I had a lot of the usual symptoms — peeing in bed, losing weight, always thirsty… that sort of thing. When I received my medical records a couple of years ago, the doctor had the reason for my first visit in there as a tummy ache, thirst, and fever. My urine was tested and showed glucose above 250, so I was admitted to the hospital, and my life with diabetes started.
You’ve been involved in the DOC for years now. What has this community meant to you?
It’s meant the world to me. Before the DOC, I felt so alone. Granted, I had good family support, especially from my husband, but there was just something missing. The only other people I knew with type 1 were my cousin, who was much older than I was, and barely a handful of people that my mom told me about. I had been involved in a local diabetes camp during high school, but once I started in the working world, I no longer had the vacation time to go to it, so I was desperately missing that connection. I found the TuDiabetes site one night, and within a day or so, I had friend requests from lots of people — Scott Johnson (D-blogger and advocate) being one of the first — and those stories and connections sort of brought back those feelings of “normal-ness” that I had when I was at camp. It finally gave me the drive to start trying to do better at taking care of myself. The DOC is what fills that gap and helps me feel complete. I don’t know what I would do without it.
What inspired you to enter this contest?
Gadgets and technology have always intrigued me, and so much more when it’s diabetes technology and devices. I’ve always loved to do videos on how the D-tech that I have works, in hopes that it can help someone else. I’ve done this for a while on YouTube — though not a lot recently — and it seemed it would be natural to make one for the Test Kitchen. Right at the same time that I completed mine, the contest came up, so I entered. I really wasn’t expecting to win, but I thought it would be a really neat opportunity to be able to be a voice for others in the DOC about the D-tech that we use and what we like/love about it, and what we would like to see in the future.
You reviewed the Tandem t:slim insulin pump… tell us about your experience with that and what you would like to see happen with it as far as innovation?
I’ve had the t:slim since December of 2012. At first, it worked great for me, and when the t:connect software came out, it was even better. Closer to the middle-to-end of 2012 and beginning of 2013, I had some issues that I couldn’t put my finger on, other than the fact that I had random highs. I later switched to another pump until the cartridge recall was issued earlier this year (2014). On a whim, I bought and paid out of pocket for a couple of boxes of cartridges to see if the issue had been resolved, and it was. I’ve been using it since and couldn’t be happier. Granted, the only drawback to me is the long reload time. Otherwise, it has been by far the easiest pump I’ve used. The computer software is so easy to read and understand as well, and I love that you don’t seem to need a degree to understand it. And, with the news of the G4 integration, it has me very excited about what’s to come. And boy, am I glad to see the reverse correction feature finally coming!
What’s your definition of a patient advocate?
To me, a patient advocate is someone who listens to the stories of others, tries to see others’ stories from their perspective, and uses those stories to help create a foundation for a collective voice to express our needs. An advocate goes to those who have the power to make changes, and who will listen, and and speaks up for not only themselves, but for others as well — to remind them that while we are patients, we are still people, not just case numbers in their statistics. We advocate for the changes that will help us all live better, healthier lives.
Can you tell us about your own advocacy work to date?
Several years ago, a friend of mine saw some of my posts on TuDiabetes and suggested that I start my own blog. I considered it, but didn’t think I would be “blogger” material. My thoughts were just my thoughts, nothing more, and I certainly hadn’t been trained as a journalist or anything. But, on a whim, I did started a blog and began sharing there. That was over 5 years ago and I still blog today; I do it as a way to continually share my story in hopes to encourage others living with diabetes, as well as hoping that maybe my opinions about some D-tech may be heard by some device makers out there.
During the past four years, I’ve been a member of the DSMA (Diabetes Social Media Advocacy) group’s Advisory Team and am now serving on the related DCAF Board of Directors, as well as being a part of the DCAF Social Media Committee. I help with running the Blue Fridays Facebook page in hopes to encourage others to wear blue for diabetes awareness every Friday. Lately, I’ve tried to get more involved in the JDRF as well. I’ve seen how the JDRF seems to have shifted in a positive direction, and with all of the advancements that are coming from them, I think it’s important to continue letting people know just how instrumental they’ve been in helping to get the funding for all of what we’re seeing in the works. For the past two years, I’ve helped with my local JDRF walks in running the JDRF Advocates table and helping to sign people up for text and email alerts.
What would you most like to experience at the DiabetesMine Innovation Summit, and what do you hope to contribute?
I would like to be able to see what types of innovations are happening down the pipeline and see ideas of new technology and how vendors feel it will help us. It is my hope that we, as patient advocates, can come with valuable viewpoints that maybe the creators haven’t yet considered and help to create “aha” moments for them.
How can this kind of advocacy potentially affect your life and the lives of other PWDs?
If we can create those moments of insight for manufacturers and providers, it would help to create better products. Progress is made when a company moves forward. When a company moves forward, they make a better product. When they make a better product, we — myself and other PWD’s — get better tools that can help us live better lives.
Thanks for all you do, Sarah. We can’t wait to see you at the Innovation Summit in November!