We're happy to feature another of our 2013 DiabetesMine Patient Voices Scholarship Contest winners today, one of the 10 empowered PWDs who will be attending our Innovation Summit in November.
She's a research engineer who builds implantable micro devices for people who are paralyzed (wow!), and so it goes without saying that Allison deals with a lot of research and science at work. So much so, that she doesn't want to deal with it in her personal life by being forced to constantly calculate formulas for acceptable blood glucose levels. Instead, Allison feels that current technology can do the work for her — it's just a matter of utilizing it the right way.
With that, here's the chat our junior team member Amanda Cedrone had recently with Allison about her life with diabetes and what she hopes to see happen in the D-tech and innovation world.
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DM) Can you start by sharing your diagnosis story?
AD) I was 24. It had been a pretty crazy month. It was the week I was studying for the PhD qualifier. I also had a paper due and some other things going on — it was the beginning of semester. I had symptoms, but I didn't really think anything of them. I kind of ignored everything. Finally, I took the big PhD qualifier exam — it was a Tuesday — and it was an eight-hour type of exam, pretty strenuous. Waiting to go home, I could feel how tired I was. Taking the steps up to my apartment was very difficult. The next day I was tired again, and the day after that I had to get a ride home from work and school, even though I had driven my car. I was just so tired. The next day, I just slept all day. On Saturday, I went to the ER and they figured it out and found that I was in DKA (diabetic ketoacidosis).
Did you know anything about diabetes at the time?
My knowledge of type 1 diabetes was pretty limited when I was diagnosed. My dad had been diagnosed with type 2 just a few months before, so I knew that carbs were a big deal and that low blood sugar was dangerous. My biggest misconception at the time was that living with type 1 diabetes was simply going to require following the rules: don't eat this, take a few units of insulin for that, and check glucose every so often, and it would be easy. I had no idea that the rules would keep changing, or that figuring out what the rules even are would require trial and error. I also had no idea that I would have to fight insurance companies or the misconceptions of other doctors.
Many who are diagnosed with type 1 in their 20s say it's tough because they don't fit the stereotypes... Did you experience any of that?
I definitely experienced a few misconceptions, but nothing that really bothered me. Some of my friends had assumed that I must have had type 1 as a kid, but just wasn't diagnosed until later. The bigger problem with being diagnosed at a somewhat awkward time was that the diabetes education I got was lacking. I started on a fixed dose of Novolog 70/30 and carb exchanges. I didn't have any tools or knowledge of what to do if I ended up hyperglycemic for one reason or another. After reading various forums and blogs, I learned other approaches and was then able to push my doctor to try them.
What led you to the Diabetes Online Community?
In the first couple of months after my diagnosis, I was immersed in my work and didn't feel the need for support. I had my boyfriend (now husband), parents, and friends to lean on, even if they couldn't directly relate. Eventually I wanted more information, and went to the online community. It's definitely changed my experience with this illness.
Tell us about your professional work and what it's like designing medical devices that can be implanted.
I feel very lucky to be involved in such an interesting and inspiring research area. Most of my work is very early stage, so you shouldn't expect to hear about anyone with any of my devices implanted in the next five years or longer! There are many challenges to making implantable micro devices sufficiently robust to endure the body, so I investigate using specialized materials in the devices to ensure that the implant will remain operable for many years. I spend quite a bit of time in a cleanroom to develop the fabrication processes needed to use new materials in microscale devices. I get to work with a broad spectrum of researchers and engineers, from materials developers to clinicians, and it is fascinating to learn the perspective that each has.
What inspired you to enter our Patient Voices Contest?
A couple of things. First, I felt like I had something to contribute. Two, I'd love the opportunity to talk with other people dealing with the same thing everyday, or at least thinking about it through work. We're not doing enough with the resources that we currently have available. We have devices collecting more data than we're using, and I think we can use that data better to enhance the experience for everyone.
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Diabetes tech is now at the corner of simplifying glucose control & data-overload headaches. Fixes needed...
What are you hoping to get from our DiabetesMine Innovation Summit?
What I'd like to experience is passion about improving diabetes care being the normal thing. It's not something I talk about with my colleagues. It's not something most of them know. I read a lot of blogs, I talk to my husband a lot -- but that's it. I'd like to talk to other people and see what they think.
More broadly, how can this kind of advocacy potentially affect your life and the lives of other PWDs?
For everyone, it can hopefully make it so we don't have to do all of the analysis ourselves. There's a lot of data out there and I'm basically a scientist — I'd much rather spend all of my time analyzing data from my job or figuring out how to improve my garden. I don't really want to spend my efforts in figuring out how to have the best glucose numbers. It's not something I chose myself. If we properly use the data we can take the thinking out of it and make it all more reliable — make it so we know how to bolus for certain foods better, know how to prepare for a particular exercise setting, and so on.
We agree, Allison, and hope that decision-makers attending the Summit will listen and take these sentiments to heart from patient advocates like you! Thanks for sharing your story and raising your voice.