This is our first in a series of interviews with the 10 winners of the 2012 DiabetesMine Patient Voices Contest, who were announced back in June. If you're at all interested in how diabetes technology might best address the real-world issues we PWDs (people with diabetes) face, then you should really hear what Shara Bialo has to say! This 28-year-old from Rhode Island has been living with type 1 since age 9, and as a medical school grad, she's currently in the midst of a three-year training fellowship to become a pediatric endocrinologist!
In her winning contest video, Shara talks about her hopes for more flexibility in the devices designed for PWDs, so that these products can be integrated into our lives rather than us having to change our lives to suit them. Today, Shara shares some more details about that and what she hopes the DiabetesMine Innovation Summit can accomplish for all of us!
DM) First off Shara, what is your diagnosis story?
SB) I spent four years of my childhood in Mexico City, from age 5 until age 9. I was diagnosed one week after my 9th birthday, on Cinco de Mayo, which happened to fall a few weeks before we were scheduled to move back to the Unites States.
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In the weeks leading up to the diagnosis, I could not get my hands on enough water and was using the bathroom ten times more than usual. My clothes were starting to become loose no matter how much I ate. I even wet the bed at one point but was too embarrassed to tell my parents. After a week or two of these symptoms, my parents took me to a doctor who suspected diabetes and subsequently referred me to a pediatric endocrinologist. I was then sent to a lab for what sounds like an oral glucose tolerance test (based on my parents' description). The lab techs watched my blood sugar rise after I was given a sugary drink, and at the end of the test they sent me home with an outpatient follow-up appointment. I took a nap when I got home but my parents were unable to wake me from it, prompting a frantic trip to the ER where my blood sugar was measured in the 700's. After a brief hospitalization, my family and I were busy with diabetes classes and new routines all while preparing to move to Florida. Talk about stress!
Do you think of yourself as a patient advocate? And what do you try to achieve?
I'm not sure if I can be considered an advocate in every sense of the word, but considering I treat patients with diabetes as a physician, I feel my role is broadened by being a diabetic myself. Empathy and true understanding can go a long way in a physician/patient relationship, and I hope to empower kids with the confidence and the tools to live a long, healthy life with diabetes by sharing what worked best for me and by staying informed of cutting-edge developments.
What inspired you to focus on the concept of flexibility in your video entry, particularly the idea for retractable pump tubing?
For a very long time, I was an incredibly difficult patient and refused to change my routine. Adolescents are self-conscious enough without tacking a chronic illness on top of it that requires around-the-clock attention and medical devices. I did not want to be defined by diabetes, and the idea that people would see an insulin pump on me was the main reason I stayed on injections. Now that I've turned the corner and am more comfortable with myself, I am still most annoyed by the things that others may consider inconsequential, such as exposed pump tubing or an extra click or two on my pump screen. It made me appreciate that the little things often have the biggest impact on your daily life!
What are you most excited about going into the DiabetesMine Innovation Summit?
I am excited to be surrounded by such bright and creative minds, and hope that in congregating in this way our whole will be much more than the sum of our parts.
What would you most like to see the Summit achieve, or what do you hope to bring to the table yourself?
It would be satisfying to see the Summit achieve a cohesive vision for the pharmaceutical world to work toward — one that we feel confident can be achieved. As a diabetic physician, I hope to contribute ideas and opinions that can benefit both patients and physicians (though patients should come first!).
How do you think this might affect your own life with diabetes going forward?
I hope that attending the Summit will encourage me that the people in charge of the pharmaceutical companies are listening to patients, and that it will continue to prompt me to look for ways our tools can be improved. Along this line, I hope it inspires me to routinely ask my patients for their ideas, so we can work together to realize them.
Amen, Shara. We look forward to hosting you and seeing you become a full-fledged endo soon!