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Posts from the ‘Guest Diabetes Blogger’ Category

Guest Post: #SpareARose and Symplur.

I’m late with today’s post, but it’s a good one.  :)   This afternoon, Chris Snider of A Consequence of Hypoglycemia has contributed a guest post about Symplur and the Spare a Rose, Save a Child campaign.  It’s an in-depth look at how the stats of the #sparearose hashtag campaign influenced the spread of the message.  This post is an interesting peek at where analytics and community passion line up, and where they don’t.  Thanks, Chris, for offering your insight!

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I started working with the folks at Symplur at the beginning of this year. My objective was to tell stories and bring the patient community further into the conversation around data – specifically the data they are generating through health conversations on Twitter. After the Spare a Rose campaign concluded, I reached out to Kerri to see if I could help shine a light on the 2-week whirlwind using Symplur’s fancy analytics tool, Signals. I was given four questions to try to address.

1. How did the message spread? Did it reach outside of people with “diabetes” in their profile?
2. What kinds of messages resonated on the whole? Calls to donate, stories about why insulin matters, etc?
3. Did people with small reach still have a big impact because of the close knit nature of the DOC?
4. Can the data prove that every voice does matter?

(1.) What the data says: people associating themselves with diabetes in their screen name, user name, or description represented 43.9% (321) of #sparearose participants, but generated 63.5% (5,825,580) of the impressions. What is difficult to report on is how many of these impressions overlap within the community. How many followers do each of the 43.9% have that are associated with diabetes in one form or another? How many impressions from the other 56.1% were made on people living with or associated by diabetes? It’s difficult to truly parse out where the venn diagram sits, but I think it’s safe to say the diabetes community came strong with their effort to spread the word. This does leave me with some bigger questions to consider for 2016: How might we increase the number of people sharing #sparearose that aren’t immediately associated with diabetes? Should that ratio always favor the diabetes community? How might the appeal of Spare a Rose better resonate with people without diabetes?

(2.) I tried to see what kind of activity was generated around tweets featuring the word ‘donate’ and ‘insulin’ as those are the two biggest subjects related to the Spare a Rose campaign. Every tweet including the word donate included a link to sparearose.org or the subsequent donation page. Similarly, 93% of links including the word insulin included a link to one of those two pages. It makes sense, right? If we’re going to ask people to donate, we need to show them where to go. If we’re going to appeal to the life-saving insulin #sparearose provides, we need to include a link to show people where to go. Looking past the percentages, however, reveals something quite curious. There were over twice as many (2.3x) tweets featuring the word insulin as there were the word donate. What would the final fundraising totals look like if more tweets mentioned the fact that one of the goals of #sparearose is to collect donations? Something to think about, perhaps.

One other stat I noticed was that of all the #sparearose tweets, 67% of the ones that were recorded were Retweets. I wonder what this data would show if more communication about #sparearose was original thought rather than rebroadcasting the words of someone else. To be fair, I’m just as guilty of this as the next person. Sometimes someone else does a better job of saying what I wanted to say and rather than repurpose someone else’s thoughts and words, a simple RT is enough to get the point across.

(3.) To address this, I tried to determine what maximum follower count yielded half of the total impressions from the reporting period. And, what maximum follower count yielded half of the tweets. Where is the tipping point in the makeup of participants that best represents how much of an influence a smaller following can generate. My impressions goal was 3,536,645. Tweets was 868.

Of all the people participating in #sparearose on Twitter, participants with 19,150 or fewer followers generated a little over half of the impressions recorded – How many participants have fewer than 19,150 followers? 97%. 19,000 twitter followers isn’t realistic for most of us, so to put all of this in perspective, participants with 1,000 or fewer followers generated 3% of the total impressions recorded. A single tweet from Crystal Bowersox makes a huge difference in terms of exposure.

Of all the people participating in #sparearose on Twitter, participants with 945 or fewer followers sent a little over half of the tweets during the reporting period. So, most of the tweets came from people with less than 945 followers, but they generated less than 3% of the impressions? My thoughts on this lead into the final question.

(4.) Do small voices matter? Unfortunately I can’t report on how many links were clicked, whose tweets generated the most clicks to sparearose.org. Crystal Bowersox understands the value of a vial of insulin, but do her 60,000 followers? But, for someone with 150 followers, how many of them are going to acknowledge and engage with a donation ask? It feels cold making all of this a numbers game, but the numbers fascinate me. Is there a point where you have too many followers to trust that any significant percentage will engage with a fundraising ask? How likely will followers outside of the diabetes community donate? Should we, all of us, try to cultivate a following outside of the diabetes community in addition to the relationships we build up among the pancreatically-challenged? Is it a matter of making the right ask or the right number of asks?

So we’re clear, I don’t think it’s the responsibility of the entire diabetes community to think about the nuts and bolts of how all this works. What matters most is the passion to connect with others and help educate whoever will listen to the reality that a little can mean a lot to a child with diabetes. Thanks to people like Kerri, we can make a difference. Even if the numbers from Symplur may suggest otherwise, believe me when I tell you that every voice does matter. Every one of you reading this, telling your story, paving the way for someone else with diabetes to feel safe enough to join our crazy little group, all of us are making a difference.

#WeAreNotWaiting: The (Not So?) Brief Story of Tidepool.

Technology has scrambled forward by true leaps and bounds in the last few years, making my Clinitest urinalysis kit of 1986 seem pretty archaic.  Now, people touched by diabetes can see their glucose levels with a flick of their wrist, and there’s more on the horizon as far as data and diabetes management.  Today I’m so happy to have Howard Look, President, CEO and Founder of Tidepool, sharing his personal diabetes story on SUM, talking about why he simply cannot wait.

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“Katie, why are you going to the bathroom again?”

“I have to go! And I’m SOOOO thirsty!”

Our story is probably familiar: We were on a weekend camping trip and all together in our family-sized tent. Katie, now 14 but 11 at the time, had gotten up THREE TIMES that night, unzipping the tent and wandering with her flashlight to the campground bathroom. The next morning, breakfast was the usual campground fare – several glasses of orange juice and pancakes.

By noon, Katie was throwing up.

It was an exciting time in our family, full of possibility. Katie had just started 6th grade at a new school. She was making new friends, trying out for the softball team, and was ready for new challenges and a new chapter in her life. Who knew.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

A day later, we were at Lucille Packard Children’s Hospital at Stanford. I just wanted someone to say “Don’t worry, your daughter is not going to die.” I wasn’t so sure. After a sleepless night and a morning full of words we didn’t understand (beta cells, boluses, ketoacidosis…) our heads were spinning. Fortunately, our day-one angel, Jen Block, looked Katie straight in the eye and calmly reassured us: “Katie, I just want you to know that everything is going to be OK. You are going to be fine. I have type 1 diabetes just like you.” Jen showed Katie her insulin pump and explained how she could have the same thing. In Jen, I could see a grown-up Katie. And finally I knew everything was going to be OK.

Well, sort of…

Like Crawling through Broken Glass
I’m a nerd, a Geek Dad. I’ve lived and worked in Silicon Valley since college and have been really fortunate to be a part of some really cool things: I was on the founding team at TiVo and was VP of Software at Pixar. Just prior to Tidepool I was VP of Software at Amazon.

Like geeks do, I dove in to try to understand what T1D was all about. Katie had mastered computing doses and giving herself shots really quickly (great at math, that’s my girl) and we saw the value in an insulin pump and CGM right away. Within three months, Katie was on a pump and a CGM.

I tried to get us up and running with the software that came with her pump. Bzzzzzt. No sorry, thank you for playing. It won’t work with your browser. OK, you made it work with your browser, but your plugin is out of date. OK, you updated the plugin but BEWARE: it’s an unsigned app that you shouldn’t trust. OK, you are willing to take that risk, but your new computer has USB 3.0 and the USB stick isn’t compatible with that.

Some people wonder why almost no one uploads their pump data… I think I know why: because getting it to work can be like CRAWLING. THROUGH. BROKEN. GLASS. And remember: I’m a software guy, a Geek Dad… I usually LIKE dealing with this stuff. But I found that even if you could get it all to work, the software didn’t provide intuitive, actionable insights.

To make matters worse, Katie didn’t like her first CGM. It hurt to put it in (we called it “the harpoon”) and it wasn’t accurate for her. Fortunately, the Dexcom G4 had just come out, which worked MUCH better. It hurt less and gave readings that were dead-on with her BGM.

But unfortunately, Dexcom Studio is PC only we are a Mac family. I sorted that out (with Parallels for Mac), but still, we had one piece of software for the CGM, a different piece of software for the pump and BGMs, and no way to see it all together in one place.

I asked myself, over and over:

Why is this so hard? And WHY ISN’T ANYONE DOING ANYTHING ABOUT IT???

Right around that time, fellow Geek Dad, T1D guy and tech blogger Scott Hanselman posted
The Sad State of Diabetes Technology in 2012”. I was fist pumping and shouting “Yeah! What he said!!!” while reading it. If you scroll halfway down the comments, you’ll see me chiming in:

“… I have a dream that a smart, motivated team of people could create ‘The Mozilla … of Diabetes Technology.’ … What if we … did it in a way the wasn’t constrained by VC funding and sought goodness, not profit?”

Scott’s article catalyzed me to take action. I met with anyone that would talk to me and looked for people who felt like I did. Jen Block introduced me to Lane Desborough (at Medtronic at the time), who introduced me to Aaron Kowalski at JDRF, who introduced me to Brandon Arbiter, who had invented this amazing app called Nutshell. I had found my peeps.

Jen also introduced me to Dr. Joyce Lee, who connected me to Dr. Saleh Adi at UCSF, and to Steve McCanne, yet another Geek Dad (or as I called us “D-Dads with Attitudes”). Steve also has a teen daughter with T1D, and had been hacking some code to make it easier for Dr. Adi to review his daughter’s data, all in one place. When I saw what Steve and Dr. Adi and the team at UCSF had put together, I knew it was the start of something beautiful.

#WeAreNotWaiting
Fast forward to now, early 2015. Tidepool has existed for just over a year and a half and I’m really proud of what we’ve accomplished in a very short period of time. As the hashtag says, #WeAreNotWaiting.

In the beginning, we got funded by some very generous donors. That allowed me to hire an amazing team of developers and designers. Six of us have T1D, and two of us have family members with T1D. We like to say “We have pancreas in the game.”

Our mission is simple: Deliver great software that helps reduce the burden of managing T1D.

We’re tackling that mission in a pretty unique way:

  • We are a non-profit. We’re not in this for the money. We’re in this to help make things better for the whole diabetes industry. By not competing, we can get more done.
  • We are an open source project. This lets us leverage a vibrant, motivated community. It also means we are giving away the source code for free.
  • We feel strongly that design and usability matter. T1D is a burdensome disease. You don’t need the software to be making it worse.
  • We are building everything with the utmost attention to privacy, security, HIPAA and regulatory compliance. Yes, this is more work and takes longer, but without this, we can’t achieve broad distribution and help as many people as possible.

Most importantly, we are helping the industry see the value in liberating device data. We’ve made it very clear: We believe that patients own their own health data. People should get to choose what software they want to use to for their diabetes therapy with that data.

We’ve made great progress on the open data front: Asante, Dexcom, Insulet, Tandem and Abbott have all given us their data protocols. We also have great supporters at Animas and Medtronic and they are considering it. We will also implement and support the IEEE 11073 standards for BGMs, CGMs and pumps, which will make it that much easier for device makers to create interoperable products.

What is Tidepool building, and where are we headed?
The Tidepool Platform enables the next wave of diabetes applications. It’s secure, HIPAA-compliant and lets you choose how you want to see and share your data. We hope that it will foster a whole new ecosystem of applications that help reduce the burden of T1D.

The Tidepool Uploader gets data from any diabetes device that has made their device protocol available.  It’s a Chrome Extension, so it works with Macs and PCs (and Linux, too, if you’re a geek like us :) . JDRF generously funded development of the Uploader. The project will also make it easier to gather data that will be useful to artificial pancreas researchers.

Blip is the home for all of your data. You can see it all in one place. You and the people who support you can use Blip to look, learn and make informed decisions together. Blip is currently being used in a pilot study at UCSF. We’re talking to other clinics like Stanford as well. We hope to have Blip ready for broad testing and deployment in the first half of 2015.

Nutshell is a mobile app that remembers what you ate and ties it together with your diabetes numbers. The next time you order that burrito, you can figure out how much insulin you need with confidence. Nutshell currently exists as a working prototype and we’re looking for funding to take it further.

Going forward, we have lots other projects to tackle:

  •  We’ll be asking users if they’d like to donate their data to an anonymized research database. We plan on exposing that database freely. We also plan on creating the “Tidepool Query Language” and APIs that will enable researchers to easily use our platform to conduct studies based on device data.
  • We will integrate fitness data from apps Strava and RunKeeper and devices like FitBit and FuelBand.
  • Our platform is the perfect foundation for artificial pancreas research and commercialization.
  • We’d love to build an advanced decision support interface that will help people and their doctors optimize their insulin therapy. We have a prototype of this called Sonar.
  • Some device makers will choose to let us host their data and applications. For them we’ll need to expose APIs so they can access their device’s diagnostic data and let them connect directly with their customers. We hope to generate modest revenue by doing this so that we can become a self-sustaining non-profit.

Which brings us to…

How you can help?
Most importantly, we need your financial support. So far, we’ve had some very generous donors who have supported us. Unfortunately the funding that we have received up to this point is not enough to get us to where we need to be.

The good news is that we have a solid plan to generate just enough revenue to break even and become a self-sustaining non-profit, hopefully by the end of 2015. That means that you can think of your donation as an investment in the future of diabetes technology. There is no financial return on this investment since we are a non-profit, but you will definitely rack up Good Karma.

There are other ways you can help to. If you are a developer, tester or UI designer you can volunteer as a contributor to the project. Join us at https://developer.tidepool.io for more detail. If you have experience with regulatory filings, you can help us with those. It’s a lot of work!

If you want to stay in touch with us and hear about updates, you can sign up for our mailing list at tidepool.org, join us at facebook.com/Tidepool_org and follow us on Twitter @Tidepool_org.

Thanks to Kerri for letting us take the mic for a little while, and to the entire diabetes community for your ongoing support of our efforts.

#WeAreNotWaiting

Cheers,
Howard

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Howard Look is the founder and CEO of Tidepool, a 501c3 non-profit with the mission of reducing the burden of managing diabetes through technology. Prior to Tidepool, Howard  was on the founder’s team at TiVo where he was VP of Software and User Experience. He was also VP of Software at Pixar, where he led the team developing Pixar’s proprietary film-making system, and at Amazon where he ran a secret software project to develop devices that leverage cloud services. Howard has a BS in Computer Engineering from Carnegie Mellon University. His teenage daughter has T1D.

#WalkWithD: Lorrian’s Type 2 Experience.

(This might look familiar to you …)  A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

Last week, John shared his story, and this week, Lorrian is sharing hers.  Lorrian Ippoliti has been living with type 2 diabetes for almost 11 years, she is a native Californian, and she has been married to her husband, Mike, for nine years.  Today, I’m grateful that she’s sharing her #walkwithd.

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The year before my diagnosis, my primary care physician called me and told me that my annual blood work showed that my “sugar (was) high” and that I “should watch it.”  Watch my sugar? What did that mean?  I didn’t ask, and my doctor didn’t offer.  [She certainly didn’t say anything about pre-diabetes]

The following year, my doctor’s office asked me to return so my doctor could review my blood work in person.  My doctor told me I had type 2 diabetes, gave me a sheet of paper about low carb diets, a prescription for Glucovance, and told me to “call me after you pick a meter.”  [My A1c was 13.4, but she didn’t explain what that meant]

That. Was. It.

No referral to an endocrinologist, no suggestions for reading materials or classes, no direction on how to choose/where to find a meter, and I was too stunned and frightened to ask any questions.

My husband and I researched diabetes (thank goodness for the Internet) and made drastic changes to our diet because of our fear, which led to multiple hypoglycemic episodes (chugging fruit juice in Costco, anyone?).  A coworker of mine explained to me about meters and showed me how to test, and a coworker of my husband’s referred me to an endocrinologist.

The endo took me off Glucovance, which eliminated most of my hypo episodes.

Even with my husband’s support, the first 8 years were awful, full of misery and fear and guilt.  The drastic diet changes we’d made were hard to sustain and I was constantly battling food and trying to make sense of how my body reacted to it.  I somehow got my A1c below 7, only to have it climb back up to the 11-ish range as I alternately rebelled or gave into feelings of helplessness.

Eventually, that endo told me there was nothing else medically she could do for me.  Yeah, a doctor gave up on me.

I completely gave up on myself after that.  I continued to take my medications, but for about a year I didn’t see any doctors at all.  I didn’t think anyone could help me or would listen to me.  (Even my dermatologist argued with me about the name of one of my diabetes medications, insisting that there was no such thing as Glimepiride and writing down Glyburide in my chart instead, so I gave up on him!)

Eventually, my husband told me how worried he was about me and that he wanted me to live for a long time.  Mike had found a nutritional therapist and we began seeing her as a couple.  Then he asked me to see his primary care physician, who turned out to be the first doctor to listen to my frustrations and fear.  He was so caring and agreed to manage my medications, but told me he wanted me to find an endo and gave me a six month deadline.

I found a new endocrinologist who is kind and compassionate, and both a cheerleader and a taskmaster.  She listens to me, celebrates my small victories, and pushes me to accomplish more than I believed I could.   Was there anything she medically she could do for me?  Sure!  She tweaked my medications, taking me off Glimepiride, increasing my Actos, and adding Lantus (insulin) and Victoza (an injectable which slows the emptying of my stomach).  (These medications were all available when I was seeing the previous endo.)

I’ve gained weight using Lantus, but my A1c has decreased from 11-ish to 7-ish.  I’m also back to having hypo episodes (one or two a month).  It’s a frustrating trade-off.

About two years ago my endo prescribed a Dexcom CGM, which has helped change my outlook about having diabetes.

For example, my endo wants me to have a glucose level of 100 mg/dl when I wake, which has been impossible for me to achieve and made me feel like a failure.  Using the CGM revealed that I have dawn phenomenon.  Seeing my glucose level in action relieved a lot of frustration – and – my endo can see that I hang out around 100 mg/dl for much of the night, but my level usually rises 30-40 points starting around 4:30am.  Plus, as an accountant I’m a data geek and having access to my numbers round the clock has helped me see patterns related to food and activity.

It has been an arduous journey since my diagnosis.  I’ve gone through the various stages of grief – indeed multiple times it seems – and I believe I’ve finally arrived at acceptance.  I can live with diabetes.

Kerri’s blog has been a touchstone for me throughout my journey – her openness about the challenges she faces have helped me know that I’m not alone, and I especially appreciate learning about the technology available to us.  In fact, my endo was impressed that I already knew what a CGM was, and now I’ve added CGM in the Cloud/The Nightscout Project to my diabetes management. (I HIGHLY recommend it!)

I share John’s outlook on what the designation type 1 vs. type 2 means.   Despite how we each developed diabetes, I feel that those of us with the disease share many more similarities than differences.   I want to thank Kerri from the bottom of my heart for inviting me to share my story and I’m looking forward to the future.

Thank you so much for sharing your story, Lorrian!!!

#WalkWithD: John’s Story.

A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

I want to know what it’s like to walk with type 2 diabetes, and today, John, a self-proclaimed 67 year old “youngster” and currently living in the southeast Alaska panhandle, is answering a few questions about what life is like for him.

Kerri:  Thanks for taking the time to chat with me today, John.  When were you diagnosed with type 2 diabetes?

John:  I think it was October 18, 2007.

Kerri:  Did you know anything about diabetes before your diagnosis?

John:  Yes a little, I had a cousin, uncle and a niece that had type 1 and even though I was a few years older than my niece we used to play together as children and were quite close.  I was also a babysitter to her when she was young.

Kerri:  How did your diagnosis impact you, physically?  How about emotionally?

John:  I was told to lose some pounds, I was 260 when diagnosed and they wanted me down to 190.  It took me almost a year to get 196 and I found that I couldn’t maintain it and feel comfortable at all, so I let my weight drift back up to about 210 and have remained at that weight ever since.

Emotionally?  I was relieved, I was having some heart problems and it seemed to me that it was getting worse and the doctors couldn’t figure out why.   Then one of the E.R. doctors noticed that every time I showed up in ER that my blood sugar was somewhat elevated.  That led to an A1c, which was off the chart.

Kerri:  Now that you are a few years into your diabetes journey, what have you learned along the way?

John:  Quite a lot about the disease, I at first researched Type 2 only and then I read an article about how diabetes progresses in the body if left unchecked and I thought at first that it was an article about Type 1, but then as I reread the article again I realized that it did not make any difference how the diagnoses was made it was the same disease.  The only difference was in how we each contracted it.  Right now, it is known that in the PWD’s T1, the immune system attacks the insulin producing cells of the pancreas  and destroys them, and, PWD’s T2’s there are several ways that the same cells are either destroyed or made to under-perform.  The end result is a disease called diabetes.  So I then stopped looking at it as the type of diabetes someone had and started to notice how they were treating their diabetes, so that I may be able to treat mine better.

Kerri:  What makes you want to tell people about your diabetes journey?  Why do you think it’s important for people with all kinds of diabetes to share their stories?

John:  My story is going to be similar to someone out there and just maybe that person needs to know that they are not alone.  The more people that stop being afraid of this disease and start letting people know that they have this disease the more that diabetes will be recognized as a viable threat to their own health.

Kerri:  What do you want people to know about life with type 2 diabetes?

John:  What I want everyone to realize is that I don’t have “type 2 diabetes” but that I do have “diabetes” and the way it came about is type 2(reason unknown).  I treat my diabetes just the same as many thousands of other diabetics and it does not make one bit of difference what type it is.  Being a certain type is good for person to person conversations in a give and take on how we treat our own version of diabetes and it’s good that our doctors know, but beyond that it’s useless.  Living with diabetes is not easy, it takes a lot of time that I would like to be doing other things.  It often times scares the heck out of me and it is not a set in stone science, it at times does things that seems to defy all reason and it will bite you if you don’t pay attention.  It never stops and that is the worst one, it is there all the time, no letup.  But with knowledge and the right tools it can be managed and quite well, just not controlled, at least not by me.

To every negative there should be a positive, my positive is that I am in better general health than almost all of my friends that don’t have diabetes, you see, I now take the time to take care of myself, eat right, exercise.  Before I was diagnosed with diabetes I never seemed to have the time to do those things.

Thank you so much for sharing, John, and I’m looking forward to sharing more perspectives from my type 2 peers in the coming weeks. 

If you are living with diabetes of any kind, please raise your voice.  Your story matters!  #walkwithd

Guest Post: No Child Should Die of Diabetes.

Veerle Vanhuyse is off and running … literally.  Verlee lives with type 1 diabetes and is running the NYC Marathon in a few weeks, aiming to raise awareness and funds for the IDF’s Life for a Child program.  Today, I’m proud to be hosting a post from Veerle about her marathon goals!

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A quarter of a century it’s been already but it still feels like yesterday. About to turn 16 and counting the days to leave for France with a bunch of teenagers to learn the language. I hadn’t been feeling well over the last few weeks and my trip to France became a trip to the hospital. Diabetes! I took my very first shot of insulin on my birthday. Sweet sixteen indeed!

In the beginning, I did really bad, didn’t take care of it at all. Only in my late twenties(!), I took diabetes more seriously and got my a1C’s from 9+ to 5%.

Eighteen years and a child later, I started running. And in eight years time I went from 100 meter and being exhausted (I’m not kidding), to 5K, 10K, half a marathon and finally the full monster; Berlin Marathon 2012.

That sad girl back in 1987 would’ve never guessed she would be doing what I’m about to do in one month:  Being at the start of the mother of all marathons, New York City 2014!

Needless to say, I am very excited about this upcoming event. But make no mistake, there’s no such thing as knowing exactly how to anticipate with the sugars before a long run, or any run for that matter. Every workout is different, depending on so many factors all diabetics deal with every single day.

Three weeks before the Berlin marathon, I suddenly realized I should grab the opportunity to raise money for diabetes. And I did. 1.700 euro went to research at the University Hospital in Leuven, Belgium. But this time I wanted to do something more specific. It didn’t take me long to find a new great goal. Surfing the web for a few hours I found a wonderful initiative called ‘Life for a Child’ supported by the International Diabetes Federation. I read about Dr. Marguerite De Clerck, a Belgian nun who spent the past 55 years treating children with diabetes in the Democratic Republic of Congo.

It instantly hit me! THIS was a project I immediately believed in and I wanted to make a difference for.  In the end my goal is comparable to the wonderful Spare a Rose, Save a Child campaign: Provide children and youth in developing countries the basic care they need to stay alive with diabetes.

So far, I raised 2.500 euro, and I’m working really hard to at least double this amount.  I’m hoping to help families in Kinshasa keeping their loved ones alive.

It is a clear message: No child should die of diabetes.

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I asked Veerle to provide a bio, and the one she sent to me in first person language was too laced with passion to edit in any way.

Here’s Veerle, according to Verlee:  “There’s the Belgian, so called ‘outgoing’ 43 year old, who talks a lot and who’s always in for a joke. And there is the T1 diabetic since 27 years, who can be really sad about the battle she has to fight against the disease every single day. “She deals with it really well,” people – even close to me – would say. They have no idea. One way to “deal with it” is running ! A lot! And in less than 4 weeks, I’ll be living my dream: NYC marathon ! Last race, because there’s also arthritis in my foot now. With this last 42,195km, I’ll be raising money for Life for a Child, to provide children in Kinshasa with the necessary supplies, proper care, and some decent education they need so badly. I am extremely passionate about it, and I want to scream as hard as I can: Please people, read my website and find it in your heart to donate, donate, donate!!!”

To donate to Veerle’s efforts, please visit this link on her websiteThanks for raising awareness, Veerle!

Guest Post: Diabetes and Our Relationship with Food.

Georgie is a twenty two year old university student and future French teacher living in Melbourne, Australia. She’s had type 1 diabetes since 2010 and has become very talented at hiding her pump in various dance costumes.  She hates her pancreas but loves the DOC, and is in the very slow process of creating an organisation Down Under to help those with type 1 diabetes and eating disorders. 

I feel lucky that I’ve had the opportunity to spend time with Georgie (she is my favorite holiday card buddy), and today I’m very lucky to have Georgie guest posting about disordered eating, diabetes, and the way we view food.

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Sometimes I read things while procrastinating on the Internet that strike a chord with me. Usually they are quotes that revolve around cats and wine, but occasionally there is one gem that sticks with me. I read a quote recently while scrolling through Tumblr that read:

“We are prescribing for fat people what we diagnose as disordered eating in thin people.” – Deb Burgard, keynote at the 2011 NAAFA conference.

At first this quote didn’t surprise me – it seemed quite obvious really, I muttered a ‘duh’ and kept scrolling until I hit the funny cat pictures instead. It wasn’t until I was sitting down to my dinner that night, slowly adding up my carbs, and berating myself about my 16.8 (288 mg/dL) that I realised that there was a reason for that. I was identifying with that quote so strongly not because I am morbidly obese and have had doctors make me count my calories, but because I have type 1 diabetes and “disordered eating” is basically my normal.  We are asked to weigh our food, count our food, know everything there is to know about our food, and yet somehow keep a healthy attitude towards what we put in our mouth every day. Some people manage this – but I know a lot of us don’t!

People with type 1 diabetes are set up for a weird relationship with food, no one seems to mind, and it’s driving me crazy.

“You have to see what’s on your plate as numbers!”

“Don’t eat that, that’s bad!”

“What do you mean, you’re not weighing your food?”

We are doubly lucky though – not only do we have healthcare professionals telling us what to eat, we also have the Food Police!

We all know the Food Police. They can be sneaky – they come disguised as your work colleague, your neighbour, or your aunt at a family dinner. They usually come armed with “lots of knowledge” about diabetes, because their third cousin’s grandma had diabetes, and she “DIED because she ate too much cake!!!” It hides under the guise of concern, but mostly it’s a nosy way to exert control over you while claiming that it’s for your own good. At one point I had a member of the Food Police say, “What if I hadn’t been there to tell stop you eating that? Haha!” Oh, I don’t know, I would have eaten this muffin anyway, but without the omnipresent feeling of shame?

The only other group of people that I know whose food choices seem to be up for public comment are obese people – which is why I think the quote above stuck in my head. We are both told to live a life that revolves around counting our food, and people in our life feel the right to comment on whatever is on our plate. Is it any wonder that some of us start to see food as the enemy? The most ridiculous thing about this is that we CAN eat what we want – we are just like anyone else, except our pancreas comes in syringe/pump form. Would you ever look at the food on a twelve year old’s plate and say “There’s way too many carbs on that plate – remember, you’re trying to lose weight”? No? Then why do you feel obliged to say it to a child who happens to have type 1 diabetes?

Food shouldn’t just be a number; food is there to be enjoyed! I look at a piece of bread and I see “15 grams,” but I should also see “I am full of delicious grains to get you through the afternoon” and “Damn, I taste delicious with some avocado.”

Food is not inherently bad or good. Did your donut creep up on you during the night and rip out your pump site while letting out an evil cackle? The only labels food should have is a Post-It saying, “Eat me, I’m delicious.”

Food is food – what you eat does not define your worth as a person, and leading on from that, what you eat, how much you weigh, and what your hba1c is does not define how “good” of a diabetic you are. We HAVE to stop looking at our A1Cs, our weight, our food choices, and our insulin dosage as something that we can measure and evaluate ourselves against.

How is that healthy? Disordered eating doesn’t necessarily mean an eating disorder, it means eating in a way that could or does harm you physically or psychologically,  and I’m pretty damn sure that some of the practices that healthcare professionals are advocating do not create healthy and balanced attitudes towards food.

When I was volunteering on a kids’ diabetes camp last year, a twelve year old girl was sitting next to me at supper and wouldn’t eat her cookie.

“Why honey? The dieticians told you the carbs, right?”

“Yeah … but Mum won’t let me eat stuff like this at home, she says it’s bad.”

“Food isn’t bad or good, food keeps us going and it’s delicious – don’t you like it?”

“Yeah I do, but … Mum would be so angry – is there an apple or something instead? I can’t eat bad foods.”

My heart nearly broke – this girl, already under pressure from society to look a certain way, can’t bring herself to eat a cookie because her Mum, and no doubt her healthcare team, has told her that foods are ‘bad’ and ‘good.’

I appreciate that it’s a very fine line for carers and healthcare professionals, between keeping their patient healthy and not causing them to hate everything they put in their mouth – but food is not the enemy.  Food is not something we should judge ourselves by – we have to stand up for ourselves. Don’t let the fact that we’re acutely aware of what we’re putting in our mouths affect our enjoyment and love of food.

Food is not the enemy, our pancreases are!

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An In-Depth Look at the Diabetes UnConference.

Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”  In keeping with that theme, The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes, is on tap for March 2015.

Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, Dr. Nicole Berelos, PhD, MPH, CDE and Kerri Sparling [me ... can you tell this part was a bit of a cut-and-paste from the "about" page on the UnConference website?  Yes ma'am.]  These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.

The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 – 15, 2015, and today, I’m talking with founder Christel Aprigliano about the when, how, and most importantly the why of this ground-breaking event.

Kerri:  I know you.  And think you’re awesome.  For those who haven’t met you yet, who are you, and what’s your connection to diabetes?

Christel:  I was diagnosed with type 1 diabetes at the age of Six Until Me times two. (That would be twelve years old, if you have problems with math like I do.)  I didn’t know many other Type 1s growing up and spent a lot of my teens and early 20s ignoring the physical and psychological issues of having this disease. I had a great medical team that stuck with me and helped me to learn how to live with it, not fight against it.

In August of 2005, I complained to my then boyfriend (now husband) that there weren’t any weekly podcasts about diabetes. Next thing I knew, we had started diabeticfeed, talking about diabetes research news and interviewing people doing amazing things with diabetes. (This interview was in January, 2006 with a woman named Kerri Morrone. We talked about Jettas and diabetes.)

I joke about being a part of the DOC before it was the DOC. While we stopped producing diabeticfeed, I’m doing other things: writing at ThePerfectD, working with other advocates on cool projects like StripSafely and CGMSafely and founding The Diabetes UnConference. While I’m not thrilled to have diabetes, some of my most favorite people in the universe came from connecting with others because of it.

Kerri:  There are a lot of conferences that center around diabetes.  Why the UnConference? 

Christel:  I’ve been to a lot of diabetes conferences and some of the best experiences I’ve had are not in the research sessions or keynote presentations; it’s hallway moments when I’m connecting with another Type 1 or sitting around a lunch table sharing stories and tips. I would leave these conferences wishing that I had more time to talk about the emotional aspects of having this disease and how to live well with it.

During a brainstorming session at the Medtronic Advocacy Summit in January, a question was asked: “What could you do this year in the diabetes community to make a difference?” And the next thing I know, I’m saying that I wanted to have a conference that would bring adults with diabetes together to talk about living with diabetes and learning from each other  – an “unconference.”  (Unconference is a concept made popular by the tech community, where the agenda is decided by the participants during the first hour of the conference. No keynotes, no research sessions, just talking and sharing in a safe environment where there’s no judgement.)

What also makes The Diabetes UnConference unique is that it will bring type 1 and type 2 adults together in one room for a multi-day conference. No other conference does that. We all have non-functioning pancreases (only varying by degree), we have many of the same long-term complications, we all have to deal with depression and burnout and stigma, and we all want to live well with diabetes. We can learn from each other in a safe environment.

Kerri:  What was the scariest thing about taking the leap to put this conference together?  What was the most empowering?

Christel:  The scariest thing has been the idea that I’d be sitting in a huge meeting room in Las Vegas by myself, eating several thousands of dollars worth of food by myself to fulfill the contract that I signed with The Flamingo. I don’t have enough insulin to bolus for it all! (Thankfully, everyone I’ve spoken with about The Diabetes UnConference has been excited about it.)

Really it’s the idea that there people out there who need and want to talk with other people with diabetes and don’t know that this exists. It’s always that way with something new and innovative, isn’t it? We also have scholarships available for those who do want to come but may not have the financial resources to attend.

The most empowering? Knowing that it’s the community that is making this happen. I may have had the initial idea, but without amazing facilitators and participants who want to create this unforgettable experience is mind-blowing. This is about a community helping each other, learning from each other, and connecting with each other. This community empowers me to believe that we can do so much when we listen to each other.

Kerri:  Why should people attend the conference?

Christel:  We spent a few hours each year talking with our healthcare team, mostly about lab results and medication adjustments or treatment recommendations. The rest of the year, we’re on our own. We don’t have time to talk with them about our feelings surrounding living day-to-day with diabetes.

Our community is amazing. We can talk about the emotional aspects of living with diabetes online, but nothing can take the place of looking into each other’s eyes when you talk about fears and burnout. It’s rare to find someone willing to talk about diabetes sexual dysfunction in public, but by creating a safe environment where others might have the same issue and may have a solution? You may not feel comfortable talking about job discrimination online, but in person? I want people to have a safe place where they can express their feelings and get support and hopefully options…

Plus, when the diabetes community gets together, we build these incredible friendships and have an insane amount of fun. Laughter is always in ample supply.

I don’t want people to feel alone with their diabetes. I felt alone for years. That’s why people should attend.

Kerri:  How can people register? 

Christel:  Go to www.DiabetesUnConference.com to register and learn more about the conference. (It’s March 13 – 15, 2015 and being held at The Flamingo Las Vegas. We got great rates for the hotel, too!)

Our scholarship applications are open until September 30, 2014.

We’ve got some wonderful surprises up our sleeve, thanks to our sponsors. Insulet, Dexcom, Roche, and B-D have committed to helping make this conference happen, and I’m so grateful. (That being said, any company who is interested in helping can contact us and be a part of this.)

Kerri:  Thanks, Christel.  And for those reading, the scholarship applications are open until September 30th, so if you’d like to apply, please click over and send in your applicationHope to see you all in March in Las Vegas!!

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