Patient Voices Winner: from Halle Berry to Diabetes Empowerment

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Today for the final interview with our 10 Patient Voices Winners (who"ll be joining us for the 2015 Innovation Summit at Stanford in November) we"re delighted to host longtime friend and fellow advocate Kelly Kunik.

You may recognize Kelly as the voice behind the popular blog Diabetesaliciousness. She comes from a family chock-full of type 1 PWDs, and was diagnosed herself as a kid more than three decades ago.

We"ve known Kelly for many years, so are happy to finally have the opportunity to feature her here at the "Mine, sharing her personal story and all she"s been part of in the evolving Diabetes Online Community... especially her newest initiative, #IWishPeopleKnewThatDiabetes, that had its own booth at the recent Friends For Life conference in Orlando, FL.

DM) First, give us a little intro about who Kelly Kunik is…

KK) I’m an East Coast beach girl, born and raised in South Jersey and currently residing somewhere between Philadelphia and NJ.

I’ve been type 1 since age 8, diagnosed on Halloween and my parents’ wedding anniversary – that’s why I consider myself having diabetes humorist-timing! I’m also pretty big believer that laughter is a key, especially when it comes to living with diabetes.

A lot has changed since then. What do you think has been the biggest advancement in D-tech and management?

When I was diagnosed, there was no such thing as D-tech. You tested your “sugar” by testing your urine: Orange = bad, Blue = good, and a rainbow of colors in-between. Insulin took forever to work, came directly from cows and pigs, and there was no such thing as fast-acting. The diabetes diet was restrictive, to say the least, and was based on an exchange program.

A few years after I was diagnosed, glucose meters came out. The lancets were weapon-like, the meters and test strips weren"t covered under our insurance, and my parents, sister and I went to the pharmacy to learn how the meter worked.

Here"s one of our "family meters” from back in the day.

Speaking of family, you have a lot of diabetes in your family, don’t you?

In my immediate family of eight, four were diagnosed with T1. My dad (who was one of seven children) developed T1 as an adult in his 30s. Two of his three sisters were diagnosed with type 1 as children too, in the late 1920"s/30s.

I"m one of six children and three of us were diagnosed with T1 as children, me and two sisters. Along with a nephew, two aunts and one cousin. My mother’s grandmother also had type 1, and it’s possible a great uncle did too. And my mom"s grandfather had diabetes -- I think it was T2.

So yep, it"s in the genes! In 1979, Joslin did a study on my family’s DNA. We were never told the result, but I like to think we helped the cause.

Did you lose anyone to diabetes?

Yes, my sister Debbie died from complications of diabetes in 1991 at the age of 33. She lived with those complications for 10 of her almost 25 years of being diabetic, and I wish her life would have been different and she would’ve had access to all the great technology we have now.

Diabetes aside, we understand your family has some remarkable things going on, including some acting talent, right?

Yes indeed, I’m incredibly proud of every single one of my 12 nieces and nephews -- 12 individual pieces of art and all incredibly talented. And three of my nieces are incredible actresses and singers:

• My oldest niece, Cristin Milioti, is known to the masses as Zelda from “A to Z,” The mother on “How I Met Your Mother,” and The Girl, in ONCE. And come this September, she’ll be on FX’s “Fargo.”

• My niece Tess Kunik is an amazing actress and recently wrote and produced of the film "Reasons I Want to Recover."

• And her 15-year-old sister Livy (Olivia) Kunik wrote the lyrics and music to one of the songs that accompanies the film. Livy is an amazing singer/song writer and has performed leads in several high-school plays.

My nephew Anton is also an incredible musician and singer and my nephew Brendan is an incredible writer. It’s in the genes for sure -- my sisters and I took dance and voice classes from an early age because my mom thought those classes would teach us poise, public speaking and other life lessons. And I have a writing, acting and production background so maybe she was right.

And your mom was a pretty incredible woman in her own right, too, diabetes aside...

My mother, Marjorie Kunik, was an incredible woman -- talented, smart, resilient and as kind as she was beautiful. She was a cross-country skier and a professional ice skater and was a featured performer in the Ice Capades for four years. She was also the strongest woman I ever knew. My mother was a scarlet fever baby, and unbeknownst to her family, her heart was damaged because of it. Since no one told her she couldn"t ski, skate, swim, dance, travel or have children, she did everything with gusto.

She was a big believer in pulling herself up by her bootstraps no matter what, and she inspired us to do the same.

My mom raised six children -- three with type 1 diabetes, in a time when there was no such thing as diabetes technology or a community. My parents were alone in their diabetes journey in all aspects. My mom was amazing and I miss her very much.

How did you get started blogging, and being active in the DOC (Diabetes Online Community)?

For a long time I heard whispers of something called “online journaling," but I didn’t pay attention to it. Then Halle Berry weened herself off insulin, Perez Hilton wrote about it, I got mad, and Diabetesaliciousness was born. Then I went a step further and researched all sorts of things, picked up the phone and called Halle"s Publicist in the NY and LA offices. And she called me back!

That experience really lit the spark re: diabetes advocacy!

I didn’t realize there was such a thing as the DOC (Diabetes Online Community), but when as soon as I discovered it, my life was changed forever. Honestly, I don"t know where I"d be without the DOC!

And how did you come up with your blog name?

Diabetesalicious was something I used to say whenever something awesome happened re: my diabetes. If I achieved blood sugar nirvana after eating a cupcake, it was "diabetesalicious." If I had an A1C that made me smile. it was "diabetesalicious." Get the picture?

So of course I wanted to call my blog “Diabetesalicious,” but at the last minute I was like: No, let’s make it more complicated to say/spell and added the n-e-s-s.

You were also one of the original D-bloggers who attended the first Roche Social Media Summit in 2009, right? What do you think about how the DOC has evolved?

It’s amazing how much we’ve grown as a community. There are so many more advocates now, and people online sharing. And Pharma has really embraced it. It was a very short period of time we were there at the Roche Summit, and none of us really thought anything would catch fire like it did.

It was just so wonderful to meet these people for the first time, and we all had these visions of what we had for our community. Now it’s great to see some of that come to fruition, as people have developed their diabetes voice. To have Pharma get that, that patients do have a voice and our voices matter and we need to work together... that’s huge!

What other advocacy efforts are you involved in?

I’ve worked with teens with diabetes -- a lot of teen girls reach out to me -- and not so ironically, so do parents.

On the flip side, a lot of women with diabetes who don’t have children reach out because they feel like they aren’t always represented in society, or in the world of diabetes. I’ve written about that and they relate.

#IWishPeopleKnewThatDiabetes Day has now become an official initiative, and I also dig busting diabetes myths and perpetuating diabetes realities.

Tell us about that "I Wish People Knew That Diabetes" effort, and the display you had at the Friends For Life Conference in July?

This all happened super fast, when I wrote a blog post about a teacher who created a lesson plan called "I Wish My Teacher Knew..." I put a diabetes spin on it, and started a hashtag: #IWishPeopleKnewThatDiabetes. And it really took off, with people sharing so much. It’s been great to see the community’s response to this, so I decided to take it to the CWD Friends For Life conference.

I was nervous going into FFL, where we"d set up a board for people to comment. But so many people came up and wrote incredible things on the board. I’m amazed at how people seemed to feel empowered by it, and a number of CWD kids were coming up to the booth and asking if they could come back and write something else. Teens were writing and talking about it, and they’re really a tough group to reach.

It’s been pretty cool seeing the response. What’s next on this for you?

I’m creating a new website, where people can go multimedia with this and express themselves past the 140-character limit on Twitter. They can write something, and at the end put the hashtag. Or post a picture. Some people like to draw or take pictures, or just talk and say how they’re feeling. Whatever media they feel most comfortable sharing their message in. That is coming as soon as possible, in the near future. I have no budget or resources really -- I’m just doing this on my own. The website is in the works, so stay tuned as it’s built and launched later this year!

Can you talk a little about the life hack(s) you submitted as part of your Patient Voices Contest entry?

First was my fancy-glass hack. I pre-measure out little fancy wine glasses and little mason jars, so that I wouldn’t have to measure that out when I go low. I’d pre-fill them, keeping them next to my bed in case I needed them overnight. I’d just grab one of these little glasses and knew exactly how many ounces were in the glass. I had already figured out the serving size in my head, since most are for 8 ounces. In other words, I did all the math before hand so I wouldn’t over-treat.

Then there"s my vial-top tool hack. After 11 years of wearing the pump, a few years ago a friend and I were on the Boardwalk one day and my pump battery started to die. And I didn’t have a coin to unscrew the battery top and didn’t have anything to open it. She said, ‘You don’t need a coin! Just use the top of your test strip bottle.’ Nobody ever told me that and I thought it was the greatest thing, to just use that like a screwdriver. When you’re out working out and don’t want to carry a lot of stuff, you can just have battery. I don’t have to even lift the lid up, you can just use the whole bottle. It works like a charm!

What are you most looking forward to at the Innovation Summit?

Everything! I can’t break down all of what I’m looking forward to. Meeting people, to see and talk technology, to see how we can make things better. I’m so excited about all of it. I’m going to be like a kid in a candy store – and I don’t have to bolus for it!

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

Disclaimer

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.

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