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A Forum & Full Disclosure

A Forum & Full Disclosure

As we all know, what we do collectively in the Diabetes On-Line Community helps so many. I’ve said it before and I’ll say it again: We are not the medical experts regarding diabetes in the scientific sense, but we are the experts at living with our diabetes 24 X 7, 365 days a year, with no time off for good behavior.

Our goals as Diabetes Bloggers/Advocates/ Empowered Patients are to show others living with diabetes that they’re not alone. Diabetes Blogging allows us to act as both students and teachers in our community and show Pharma and the medical profession the important role that Engaged/Empowered Patient plays, both on-line and off.

Many companies read what we say (both the positive and the negative,) and some have started to actually engage with us on a personal level, besides the obligatory PR pitch. But few have reached out to engage with us in IRL - in real life.

In 2009, Roche was the first Pharma Company to step up and create a face-to-face dialogue with our community - thanks to Amy Tenderich, and by doing so, they made history. The 2009 Summit was, and continues to be, a success in every sense of the word. And I’m proud to have been (and continue to be) an active participant in that Summit's success!

Recently, Medtronic reached out and asked me to do some consulting for them for an event called The Medtronic Diabetes Advocate Forum, where a small group of Diabetes Blogger/Advocates would be invited to come together and meet with various members of Medtronic for a day of diabetes workshops & deliberation.

When I asked the folks at Medtronic why they wanted to do this, they told me (and I’m paraphrasing here,) that Medtronic recognized the importance of Diabetes Bloggers/Advocates/Empowered Patients as the voices to issues that our community faces. Issues beyond technology and innovation, issues like patient support and education.

Medtronic had also heard directly from many members of the DOC, who told them that they would like Medtronic to engage more openly in our community. Medtronic felt that a positive step in that direction would be to bring together members of the DOC and do just that, engage in a conversation. And you know what? I agree. Patients and Pharma talking face to face and in real life, IS a positive step.

AND NOW FOR THE FULL DISCLOSURE of it all: So after marinating on the subject for a while, I agreed to do some paid consulting work for Medtronic on this particular project.

I think all of you know me well enough to realize that I work very hard to represent the interests of our DOC family, and whether I’m acting as a paid Consultant on a project or not, I tell like it is and put my DOC family first. And almost all of you know my family history with diabetes and know why I'm so passionate and protective.

Technology has made our lives with diabetes easier and more complex at the same time. And technology has made our voices stronger as people who live with diabetes and other chronic illnesses.

Personally, I welcome any and all opportunities for patients’ to engage with all the companies and organizations who represent us.

One of the things Medtronic asked me to do was to provide them with a list of bloggers to add to their own list they were considering extending invitations to.

Unfortunately, every blogger couldn’t be invited due to time, space, and resources - And the final choice of attendees was Medtronic’s.

In the next few days, “Save The Dates” will arrive in some of your Inboxes.

The 2011 Medtronic Diabetes Advocate Forum will be a small in number, but will represent an enormous group in spirit - And I’m excited to take part in it! And honestly folks, I can’t wait to see what transpires!

An Open Letter To Oprah & Dr Oz - Please Get Your Show About Diabetes RIGHT

An Open Letter To Oprah & Dr Oz - Please Get Your Show About Diabetes RIGHT

Dear Oprah and Dr Oz:

Rumor has it that on Thursday February 4th, you’re doing a show titled "America’s Silent Killer," and it’s completely dedicated to Diabetes.

And as a person with Type 1 Diabetes for over 30 years; a diabetes blogger and Diabetes Advocate, who comes from a family with a long history of Type 1 Diabetes, I appreciate that fact.

I"M REALLY HOPING YOU’LL GET YOUR FACTS STRAIGHT,

AND YOUR SHOW WILL REPRESENT ALL PEOPLE WITH DIABETES.

If you and Dr. Oz want to save lives and educate the public, differentiate between Type 1 –which is an autoimmune disease. And Type 2- a metabolic disease, and give equal time to both.

I’m hoping that you and Dr. Oz will go so far as to have an Endocrinologist on to discuss Diabetes in all it’s many shapes and forms.

I’m hoping that you’ll explain to the American public that both Type 1 and Type 2 are reaching epidemic proportions.

I'm hoping that Types 1.5 and gestational diabetes will be discussed as well.

I’m hoping that you tell the American public the realities of diabetes, instead of perpetuating the diabetes myths and stereotypes.

I’m praying that you will tell the American people that as type 1’s, no matter how much we exercise and eat healthy, we will always have to take insulin- no matter what!

As a person with Type 1 Diabetes, I could run a marathon daily, and I'd still have to take insulin every single day - because my life depends on insulin to survive and exist.

WHY? because PWDS (people with diabetes) bodies don’t make insulin due to that the area of our body that actually produced insulin (The Islets of Langerhans) was attacked and destroyed by our very own cells.

As a person with type 1, I have to tell you I’ve felt like type 1 is the Jan Brady of the diabetes family. The media always seems to talk about the more popular type 2 (Actually wrote a post re: titled, Marcia, Marcia, Marcia!) and those of us with Type 1 continually have to explain the differences, because the media never does.

Newscasters never seem to get the diabetes facts straight.

I’m not sure if it's shoddy research, time constraints, reporters not actually being aware of the different types of diabetes. Maybe they just don’t care about type 1 diabetics because they receive more advertising dollars from products/drugs geared towards type 2’s.

I think it’s most likely a combination. Whatever the reason(s), this needs to change!

Lives depend on people knowing ALL the diabetes facts/types!

I’m hoping that the Oprah Show Producers have done their research and hit the diabetes nail on the head so to speak.

I'm hoping....

Don’t disappoint your viewers with Type 1 Diabetes – Represent all people with Diabetes – not just one particular facet of the diabetes population!

Yours for a cure!

Kelly Kunik

Type 1 PWD