Welcome to another visit with our 2013 Patient Voices winners, who will be representing patients at the DiabetesMine Innovation Summit at Stanford University in November.DM_PatientVoices_Bug_2013 

Today we're talking with Christel Marchand Aprigliano, who lives in the Southern part of the country and was in on the ground floor of the Diabetes Online Community (DOC) back when it was just getting started about eight years ago.

Christel hit the online airwaves in August 2005 (about 8 months after the 'Mine got started!), with the first-ever diabetes weekly podcast called DiabeticFeed. After taking several years off, we were thrilled to see Christel reconnect with the DOC recently and start a new blog called The Perfect D.

Diagnosed three decades ago, Christel is a veteran type 1 who's seen a lot of changes in the diabetes world since then.  We're excited share her POV today:

DM) We always like to start by asking about your diagnosis story...

 

CA) I was 12, sassy and often too smart for my own good most days. My official diabetes diagnosis was handed to me the day after Easter in 1983, although I had diagnosed myself a week or two before with a Time magazine diabetes PSA advertisement. (It asked if I had any of the symptoms on a checklist; I had them all.) While I knew I was sick, I didn't bother to mention diabetes to anyone, assuming I would get better. I had no concept of the gravity of the situation or what diabetes was, but my parents recognized that I was very ill and took me for blood tests. I shocked the doctor when I told her I had diabetes before she could tell my parents the results.

Wow, 30 years (!) How does the diabetes universe look now, compared to back then?

Growing up with diabetes was very different in comparison to kids with T1D now. (Isn't that always the case? Gas cost a nickel. You could leave your door unlocked. Blah blah blah.) No insulin analogues. No pumps. I took a few shots a day, checked a few times a day. Technology was a heavy meter in a backpack.

You actually helped create the Diabetes Online Community almost a decade ago with the creation of DiabeticFeed. How did that idea materialize?DiabeticFeedLogo

DiabeticFeed came about when I complained to my then boyfriend (now husband) that there weren't any podcasts about diabetes. His response? 'Well, then, let's do something about it.' He produced it and I researched and interviewed people. While we loved to do it, my career and travel made it difficult to keep doing consistently. Back in 2005, the DOC didn't exist as is does now. I'm grateful for doing DiabeticFeed, because it connected me to other people with diabetes who have since become close friends.

Aside from diabetes, what else should we know about you?

I've lived in three countries (Canada, Germany, and the U.S.), speak four languages poorly (French, German, Italian, English), have an inquisitive two-year-old daughter, and an incredibly supportive husband. Professionally, my background is in sales and marketing, with a passion for non-profits. Before accepting the position of full-time activities planner for my kid, I was a Director of Membership for a large international non-profit organization. I write for fun these days, because I'm certainly not getting rich off my words. Once my daughter is older, I plan to continue my advocacy work for the diabetes community until diabetes is something that we 'used to have.'

What inspired you to enter our Patient Voices Scholarship Contest?

 

Diabetes is a complex disease with thousands of possible data points every day, but it's difficult to get a holistic view when the different devices we use don't talk with each other. I wish to see a way to put all of my data (and add additional data that's not tracked through a medical device) into one place and share that data securely with my medical team. I can't be the only one, so I wanted to be the voice that says: 'Let's make this happen!'

Lay it out for us: what's the message you wanted to convey with your entry?

Meters and pumps and CGMs don't share data well with each other. Proprietary programs don't allow for integrated viewing, so they don't give a 360-degree view of daily diabetes management. We need this. Having a secure, cloud-based online application to upload all of the data we have from any diabetes medical device would allow us (and our medical team, no matter where they are) to capture 'the full picture' and make better decisions for long-term diabetes management.

Since this is the Twitter era, what's your quick 140-character sentiment on diabetes tools and technology?

 

Today's diabetes tech tools need to go to kindergarten and learn how to share.

 

invest-in-sharingWhat would you most like to experience and bring to the DiabetesMine Innovation Summit?

The opportunity to see 'what's next' in diabetes technology and discuss my thoughts from a user's perspective is intoxicating. I'm a tech-junkie and with my dependence on diabetes technology and innovation to keep me alive, it's all the more important to learn all I can. Some of the other PWD participants have eye-opening concepts that I would applaud being put into immediate research and development, so I'd love to see the genesis of these projects happen at the Summit.

How can this kind of advocacy potentially affect your life and the lives of other PWDs?

While a cure would be wonderful (whatever your definition of cure might be), until that day comes, we rely on technology and industry innovation to keep us healthy. To listen, learn, and share what happens at the DiabetesMine Innovation Summit is my goal, perhaps inspiring others to become more involved with the voice of the user point of view.

Thanks so much, Christel. We look forward to a healthy dose of that POV at the Summit on Nov. 15.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.