Today we featuring another of our 2013 DiabetesMine Patient Voices Scholarship Contest, a woman who’s been a key player in the rapidly growing Diabetes Online Community.
In her contest entry, Corinna talked about the need for information from the products we use – not just data.
That is, she wants diabetes technology to provide feedback to the user regarding what the numbers we see actually mean. Also, she notes that not every PWD is identical and/or has the same goals, so technology should be customizable for the individual.
Our newest team member Amanda chatted with Corinna recently to learn more:
CC) Originally I’m from the San Francisco Bay Area, but I live in Hawaii now.
I’m the development manager for the Diabetes Hands Foundation, since August 2012. That means I fundraise and write grant proposals for some of the best programs in the DOC: TuDiabetes, EsTuDiabetes, Big Blue Test and the Diabetes Advocates. My professional background is in marketing communications and grants management. I’ve worked in high tech, software, public education and now the non-profit sector.
In summer 2011, I joined the DHF fundraising team as a volunteer and helped secure funding and make grant programs happen. All that really came on quickly, a couple years after my diagnosis, when I realized how little I knew about diabetes and went looking for the community. That’s when I came across TuDiabetes.org, and it all took off from there.
So back up. How did diabetes come into your world?
After three years of not seeing a doctor, in early 2009 I went for a check-up. I was really stressed out and feeling tired. I had lost my mom after a long decline in her health. I was busy being mom to my own kids and a wife. My job was crazy and stressful. You know, everyday life was wearing me out.
Well, my A1C was over 13%! My doctor was kind of surprised I waited so long to get a check-up. I was experiencing all the classic symptoms: being thirsty, peeing a lot, feeling tired. And I have a lot of the classic risk factors: overweight, sedentary, close family members with diabetes, Latina, middle-aged. I should have known better. As the saying goes, been down so long it looked like up to me.
At any rate, in the next 18 months I got my A1C down to 7.0. My doctor was pretty aggressive about monitoring my progress and bumping up the meds and I drastically changed my diet. That was my diabetes honeymoon. After that things got crazy again. I experienced a complication, was out of a job, and it seemed like my body wasn’t responding as well to the meds. My A1C crept back up to the 8s over the next 18 months. Since then, I’ve started taking insulin and working on bringing my numbers back down.
What diabetes complication did you experience?
I saw black streaks of blood dripping in field of vision. I believe it’s called a vitreous hemorrhage.
Wow, how did that make you feel, and how did you deal with it?
It freaked the crap out of me to be honest. You don’t normally see black streaks of blood in your line of vision. I saw an ophthalmologist specialist after that episode, the very next day. She monitored me for about two years. At first I saw her quarterly, then biannually, and then it was finally, ‘We’re not seeing any lasting effects,’ so I’m just on a regular schedule of getting my eyes checked for glaucoma and everything else now. Of course, if there’s ever another episode or another problem, I’ll go right back to her.
My blood sugars were high, but I wouldn’t say they were out of control. It was part of the overall taking better care of myself. I worked on lowering my blood sugar and controlling the stress in my life.
How did your complication affect the way you view diabetes treatments and technology?
Overall I feel pretty fortunate to live in the time that I do and have health insurance because that’s given me access to technology to do things like take a 3D picture of my eyeball, and see a specialist regularly so they can track if there’s progression or not. I feel fortune because I know that’s not the case for a lot of people. My hope and wish would be that quality treatment and quality, up-to-date technology would be available for everybody.
Nope. My set up is pretty simple: standard issue glucose meter, 7-day pill box, Inject-ease for my shots, and OnTrack Android app for logging. I think there are a lot of PWDs out there who have a kit like mine. It’s old school… and very affordable.
So are you sticking to old school supplies just because that’s what your insurance covers?
I use old school stuff because it works for me. But yeah, a lot of it is because of what my insurance covers. I take insulin but I take two shots a day – it’s not like I’m a candidate for a pump. My insurance doesn’t cover it, but also I don’t feel compelled to pursue it either.
What inspired you to enter this contest?
A conversation with my husband, David.
He’s director of research and development at a small medical tech company. He’s working on a project that involves sensors and we were talking about what makes the things you measure, like heart rate or blood glucose, meaningful to the doctor, the patient, and the patient’s family.
Describe the basic message you aimed to convey in your entry?
Give me information, not just data.
A number is just a number until you give it some context. For PWDs, blood glucose is the number. We spend much of our lives measuring blood glucose and then trying to figure out what it means. A graph might show history or a trend. But so what?
Unless the numbers lead to an action or decision, they are meaningless. It’s just data. What patients (and doctors) need is information. Information helps resolve the ambiguity of what to do next. I can’t rewrite the past, but with information I can influence the future.
Since you’re so active in the DOC, inquiring minds want to know: What’s your 140-character Twitter sentiment on diabetes tools & technology?
What do you hope to bring to the DiabetesMine Innovation Summit yourself?
I hope to bring a patient’s voice to the Summit that’s not often heard.
People living with diabetes are a varied bunch. So ‘one-size’ solutions are not going to fit all. Industry really needs to talk with more kinds of patients. I represent at least a couple of groups that don’t seem to be consulted a lot: I’m Latina. I live with type 2. And I take a pretty active role in managing my health.
How do you think this kind of advocacy can potentially make an impact on your life and the lives of other PWDs?
We patients are the ultimate consumers of whatever devices and treatments med tech and pharma come up with. It’s our lives that are affected, not the doctor’s. So having industry listen directly to patients puts us closer to effective treatments and devices, and ultimately better quality of life.
Thanks for entering the contest and sharing your perspective, Corinna! We’re proud to have you representing the type 2s in our community, and can’t wait to hear your thoughts at the Summit in November.