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April 01, 2013

Support for TuDiabetes.

Hey little cutie TuD!

(I'm re-blogging this message here, because I support TuDiabetes, the DOC, and also because every time I see that little TuD face, I can only think of The Facts of Life [Tootie!!])

My name is Kerri Sparling, I have type 1 diabetes, and I have been blogging about diabetes since 2005 at SixUntilMe.com.

I was diagnosed as a kid, and for much of my life, I didn't know anyone else who was living with type 1 diabetes.  Even though my friends and family have always been very understanding, and supportive, I always felt kind of alone when it came to all the diabetes stuff.

This is why the diabetes community, both online and off, means so much to me. Back in 2005, there were just a few voices talking about life with diabetes online. But now?  Now there are SO many people telling their stories, supporting one another, and making a difference, and communities like TuDiabetes really help connect people with diabetes with one another.

All these people understand what it's like to live with diabetes every single day, and together, we're there for one another.  Being part of a community like TuDiabetes makes the stormy spots with diabetes easier to weather, and when things are going well, there are so many people I can celebrate with who really understand.  

Connecting with others makes a difference in my health, on every single level. So as we celebrate the 6th anniversary of TuDiabetes, I invite you to make a donation to Diabetes Hands Foundation (the nonprofit that runs TuDiabetes and the people who came up with that cute little TuD character that photobombed my pic), so they can continue to make a difference in the lives of many more people touched by diabetes.

- Kerri.

January 24, 2013

Guest Post: Going Beyond 140 Characters.

I'm very honored to be hosting a guest post from Matt Cameron, who I met at the Australia Social Media Summit back in November.  Over several (read: six dozen) cups of excellent Melbourne coffee, I had a chance to chat with Matt and get to know this fellow over-caffeinated kindred spirit.  Today, he's writing about his new diabetes blog, Insulin Pumps Need Tetris.
*   *   *

He wants Tetris on his pump.Hi, I’m Matt from Melbourne.

Long time blog reader, short time blog writer.

Before attending Australia’s first Diabetes Social Media Summit (#OzDSMS), organised by Renza and Kim at Diabetes Australia – Victoria I thought I had two things stopping me from writing a diabetes blog. The first factor being the lack of time, the second factor being the lack of a slightly humourous blog title.  Some might argue that I still have neither of these things in my favour, but following the event, I decided to launch my blog – Insulin Pumps Need Tetris – anyway.

This was a group of people that I had largely met via Twitter, brought together by the fact that we share diabetes and a passion for improving lives for people diabetes. These people have made me feel more inclined to tweet about my diabetes, and #OzDSMS made me realise that I can be a part of our great Australian Diabetes Online Community in a way that went beyond 140 characters. That is, by joining what is a growing blogosphere in Australia.

I have quite often been guilty at lamenting that people do not “understand” type 1, that the media misrepresents type 1 ALL THE TIME and that product companies often do not engage with people living with type 1 nearly enough, resulting in products that just miss the mark. Writing a blog allows me to go a step beyond lamenting these issues and doing something a bit more constructive.

So, why “Insulin pumps need Tetris”? Soon after getting my insulin pump earlier this year, a close friend soon asked me how I was going with my newly acquired gadget. My response?

“I have no idea why I didn’t get a pump sooner. The only thing that would make my insulin pump any cooler would be if it had Tetris on it. Insulin pumps need Tetris."

(You can read more about that here.)

In some ways, diabetes intersecting with the online world is not new to Australia. We have had the benefit of the Type 1 Diabetes Network* - Reality Check forum for a long time that provides people with a chance to discuss diabetes with friendly faces/usernames; anonymously if they wish.  But in another way, the Australian Diabetes Online Community is in its infancy here. Until recent years, the blog scene has been fairly sparse and until even more recently, the twitter scene has been fairly disconnected. But this is changing - big time.

The Australian Diabetes Online Community is going gangbusters. Take my story as a case study – started on Reality Check, started reading blogs (happy to note that SUM was one of the first I stumbled across), created a twitter account, found a whole diabetes community on twitter, started tweeting about diabetes (apologies for all the other sports tweets if you follow me!), met people from social media in real life... to talk about social media, coordinate social media activities for the Type 1 Diabetes Network and now created a blog of my own.

Simon and Matt

This is all because I now feel comfortable to put my thoughts about diabetes on paper (iPad technically) due to the supportive environment that the DOC and the OzDOC provides.

We are quite lucky in Australia. We have the National Diabetes Services Scheme, considerable health professional expertise, insulin pumps are increasingly accessible and there are numerous organisations supporting people with diabetes. But there are things that need attention and for the first time, social media is allowing us to influence and drive the agenda in a whole new way.

For example, Renza’s blog post on issues regarding driving and diabetes guidelines in Australia has resulting in mainstream media attention and political interest.

All of this was not even in the realm of possibility when I was first diagnosed in 1996. I am hoping that my blog can, in a small way, complement the work of my friends and colleagues in across the Australian Diabetes Online Community, and abroad.

Note 1: My sincere thanks go to Kerri for allowing me to provide a guest post on her super awesome blog. It was an absolute pleasure to meet Kerri during her time in my home state of Melbourne, and look forward to her return visit at some point (although I’m sure she’s not looking forward to the flight!).  [Editor's note:  Thank YOU, Matty, and I'm actually looking forward to coming to Australia again!]

Note 2:  I am a committee member of the Type 1 Diabetes Network but these thoughts are my own!

*   *   *

Thank you so much, Matt, for introducing yourself, and for everything you do for the global diabetes community.  Oh, and thanks to Melbourne for having such fantastic coffee! And lastly, I wish Cat Tetris actually existed.

January 01, 2013

The Proof is in the People.

diaTribe - the littlest one.Happy New Year!!  The 50th issue of diaTribe came out last night, with a really amazing letter from editor Kelly Close, insight from the advisory board, and my response to the NPR article that came out in early December.

"Earlier this month, I was part of a piece put together on NPR about diabetes and social media, which focused on how pharma and patients interact in this medium. The NPR article referenced a quote from Dr. Jason Bronner that ruffled feathers not only in the diabetes online community, but in many other patient communities across the web. 
'But what are patients getting out of social media? It's unclear whether connecting online is helpful for adults treating diabetes. "There's no proof in diabetes that social networking is helpful," says Jason Bronner, a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes.'
I wish the focus of that NPR piece had been on the community.  Because even though Big Pharma (and their medical device friends) can be an important group for patients to be interacting with in efforts to influence new product development, etc., the most important interaction is between patients and … patients. The diabetes online community may serve many communication purposes, but at the core, it’s built for connecting people to people.

What are patients getting out of social media?  I hear this question being raised by researchers and healthcare professionals and all kinds of voices across the caregiver spectrum, and I am filled with frustration at the lack of data that proves the positive impact of patients connecting with other patients online."

Please check out the rest of this article, with quotes from fellow PWD voices - including Manny Hernandez, George Simmons, and Briley Boisvert - over at diaTribe. (Also, if you aren't subscribed to diaTribe yet, 2013 is a good time to start!  You can sign up to receive the newsletter here.)

November 29, 2012

Australian Diabetes Social Media Summit: #OZDSMS

Earlier this month, I was in Melbourne for the first Australian Diabetes Social Media Summit (#ozdsms), hosted by Diabetes Australia Victoria. The fabulous Renza Scibilia (who blogs at here) asked me to come speak with the group about the beginning of my journey as a PWD and as someone who has been sharing their diabetes story online for many years. I was honored to be part of the event.

Renza's goal for the event were very direct: "‘We wanted to find out the key issues that are affecting diabetes consumer (patient) advocates. How are they using social media to push the agenda. As a diabetes organisation, we want to be able to respond and assist using the channels available to us. It’s not about us driving the agenda; it’s about us listening.  The Summit seemed like a great way to get talking to the people doing lots of talking out there on blogs, Twitter, and Facebook."

Jo from FingerPricker summed up her experiences about the summit, and her goals going forward. "Feeling like we have all known each other forever and that, strangely enough, because we all are linked via diabetes I felt as if we were family. There is just this immediate understanding and acceptance that is calming and good for the soul. This enforces the drive within me about the importance of exercising ways to promote good emotional health to balance the demands of living with a chronic condition and that this needs promotion here in Australia."

[Editor's Note: YES! I absolutely love when people talk about the emotional well-being of patients with diabetes, which is a grossly under-served issue in the diabetes community. Go, Jo, go!!]

"Social Media platforms do not mean the end of the traditional face to face support groups or medical advice from the professionals. They can work successfully together so that our emotional well-being doesn’t fall through the gaps while we wait for our next appointment."

What makes Australia unique, in my American opinion, is that they're used to the concept of "long-haul." If they want to visit any place other than their own country (or their neighbor, New Zealand), they need to hop on a plane for hours. And the same goes for anyone who visits them. People from Australia, at least from a travel perspective, know what it's like to work to get somewhere.

Some excellent Aussies ... and a rogue American thrown in.
Happy crew from OZ!

Which is something I think translates into diabetes management pretty fluidly. Type 1 diabetes is a long-haul journey. It's not a pill you take every day and then forget about the disease. And it's not enough to manage solely the day-to-day stuff, either; you need to keep your eye on the balls you're juggling today, and then anticipate the ones you might be juggling months/years/decades from now. Long haul, many balls. (How's that for a ridiculous sound bite?)

As with other international meet-ups I've had the privilege of attending, diabetes doesn't know language barriers. (Or, in this case, amazing accent barriers.) Type 1 diabetes doesn't care where you live or how you talk or what kind of measurements you use to quantify your blood sugar results. If you are a human being living with diabetes, you intrinsically understand others who are living with it in a way that perfect strangers shouldn't be able to ... yet can.

Rachel Lamb, who doesn't blog (yet) but is an active OZ advocate through IDF and co-founder of YWAIT, left the Summit feeling empowered.  "Inspiration. Motivation. Networking. Connection. Confirmation that I'm on the right path. As corny as that sounds, diabetes has my mind on overdrive, always. Being involved in the DOC and events like OzDSMS make me feel like I might actually be sane, I'm not alone, and I'm making a difference. I get a lot of strength from the whole experience."

Being part of this event in OZ was an amazing experience, and a huge thank you to Renza, Kim, Diabetes Australia Victoria, and to my fellow PWD down under. Thanks for having me, and for being part of my diabetes journey!

[And for more from the amazing people in OZ, check out some of these sites:  FingerPricker, Diabetes Australia Vic blog, Bittersweet Diagnosis, Parent's Jury, HypoActive, Lazy Pancreas, 1 Type 1, Simon from the 70's, YWAIT, Diabetogenic, and Insulin Pumps Need Tetris.]

Disclosure: My travel, lodging, and an honorarium were provided by Diabetes Australia Vic. I was not asked to blog about the event, but as always, my opinions remain mine.

November 02, 2012

Dexcom Rash: Swinging for the Fences.

The Dexcom rash wasn't fixed by Opsite Flexifix tape underneath it as a barrier between the sensor and my skin.  Alcohol wipes after showing/before applying the sensor didn't work, either.  Neither did using a hydrocortisone cream, or Skin Tac, or Cetaphil soap.  Dexcom, regardless of what I threw at the sensor, continued to act rashly.

And this is where a reader came in with a suggestion that saved my skin.  She wrote, "You need to spray steroid asthma inhaler on the site after the alcohol or iv prep and before you insert."  She also attached a photo of a rash she received from a CGM and it looked just like mine.

Oh Internet ... I love you big time.  

It took some research, and several phone calls/visits/consultations with my PCP, dermatologist, and endocrinologist, in addition to phone calls to the Dexcom hotline o' bearded service (shout-out to The Hammer) to lock down a prescription for a steroid inhaler (the conversations about this off-label application were long and intense), and this morning marks the 36 hour mark with a sensor. 

Without a rash.  

"And there goes the ball ... right over the fence ... home run!!!" 

*Crowd goes wild.  Or at least Birdy claps her hands and the cats don't throw up, for once.*

Just as the fabulous reader (my hero) had suggested and after discussing the option at length with my endocrinologist, I showered and dried off, and then sprayed the inhaler spray against my clean, dry skin.  (It surprised me when it came out as a kind of powdery substance and not a mist.)  I sprayed it about three times to cover the anticipated surface area of the sensor adhesive.  After about 30 seconds, when my skin seemed dry, I placed the sensor on like normal and deployed the needle.  The adhesive patch felt a little stiffer and cracklier than normal, but the following morning, it was smooth and pliable against my skin, like it usually is.

But the best part is that after 24 hours, I wasn't itchy.  And this morning, at the 36 hour mark, the adhesive edge wasn't ringed with the red, puffy, reactive skin I've become used to since the end of August.  I'm not sure where this adhesive allergy came from in the first place (and for those who asked, no, I'm not pregnant), and I'm not sure why the inhaler steroid is battling it, but it is.  And honestly, after so many weeks without a proper Dexcom safety net, I don't care why it's working.  I'm just thankful that it is, and that my medical team is on board to try some different things in efforts to keep me safe.

Mystery rash cured, hopefully!

Note:  This is not medical advice.  Please don't try this without consulting with and getting clearance from your medical team.  I'm just sharing anecdotal information about something that worked in my personal diabetes life.  Nothing I ever say should be taken as medical advice because if I was really useful, I'd have an A1C of 5.7% and I'd burp rainbows.

(Second Note, for Monica, who may be reading this post today and who I know hates sports analogies.  "Swinging for the fences" means "attempts at doing difficult or near-impossible things," or at least according to Urban Dictionary.  You're welcome.  Oh, and this is also for you.)

February 13, 2012

Diabetic Barbie.

Barbie was a staple toy in my childhood, along with my Cabbage Patch dolls and Rainbow Brite.  We had Barbies that were veterinarians, doctors, airplane pilots, business women, and rock stars.  (For the record, I still know every word to the Barbie and the Rockers theme song.  We also had their tour bus, which my dad had to put together one Christmas Eve, probably with blood, sweat, and swears.)  But I never saw a Barbie with diabetes.  (Hell, I never even saw a Barbie with realistic physical dimensions, but that's an entirely different post.)

In the last few weeks, there has been a lot of discussion about a "beautiful and bald Barbie" being created to "to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother's hair loss from chemo."  Almost 150,000 people have "Liked" that Facebook page. 

After seeing this public outcry, Amy Ermel was moved to respond to her own daughter's question of "Why isn't there a Barbie with diabetes?"  And today she's talking about her desire for a "diabetic Barbie" for her little girl.

So awesome: Diabetic Barbie
Amy's "Diabetic Barbie" prototype

Kerri:  Amy, can you please introduce yourself to everyone, and let them know what your connection to diabetes is?

Amy:  Hi there! My name is Amy Ermel and I have been a "D-Mom" for over three years now. My seven year old daughter (who will be turning eight on Valentine's Day, actually!) was diagnosed with type 1 diabetes at the age of four.
 
Kerri:  Can you tell me a little bit about your daughter's diagnosis, and how she (and you) have been handling things so far?

Amy:  Emma was diagnosed on June 26, 2008 ... just a couple of months before she was to start junior kindergarten. She had been showing all of the classic symptoms, but I really had no idea. I thought that perhaps she had a bladder infection, so I took her to the doctor and was floored to find out the real diagnosis [of type 1 diabetes]. What a ride it has been since that day! Emma started off on injections and this past May she finally decided she was ready to pump. She chose the Animas Ping, and we have loved it since day one. Pumping has really given us back our freedom and it feels like we are able to live our lives about as close to how things were before diagnosis as possible.
 
Kerri:  What planted the seed for Diabetic Barbie, and why do you think it's important for kids like your daughter?

Amy:  Emma had gone to school a couple of weeks ago and had heard from friends that there was a bald Barbie doll coming out soon for cancer awareness. She came home that day and asked me why there wasn't one for diabetes? I feel that many children diagnosed with diabetes are of prime "Barbie playing" age. If they were able to sit down and play Barbies and see her with a pump, or a blood glucose meter, a lancet ... they would feel a sense of normalcy. They would feel that connection. They could play with a doll that was just like they were and it would bring a smile to their faces. The same rings true for siblings of diabetics, I believe. They could play with a Barbie doll that has diabetes just like their brother or sister does ,and it would make them proud! It would definitely be a huge self-esteem boost for our type 1 kiddos!
 
Kerri:  I saw that you have a Facebook page and are looking to grab the attention of Mattel.  What's your plan, moving forward?

Amy:  We have created a Facebook page called "Diabetic Barbie" and are trying to spread the word. We would like to have 5000 "likes" to our page so we can bring this along with a petition to Mattel and make them see that the DOC are a family.  We stand up for our kids and we want the best for them. I want to put diabetes in the spotlight and have our kids shine like the true heroes they are!

Kerri:  How can people in the DOC help you raise awareness of Diabetic Barbie?

Amy:  The DOC has shown tremendous support so far and Emma and I are truly grateful! You all are making my job as a mommy very easy. You are helping me to show Emma that it is okay to dream big ... even when you are seven years old! There are people out there willing to help you and support you! The DOC can help by spreading the word, sharing a link to our Diabetic Barbie Facebook page and asking their friends to "Like" it. Share and tell everyone you know and let's make this happen together!!

*   *   *

You can read Amy's blog at Laughing at Diabetes and, of course, visit the Diabetic Barbie Facebook page.  A little awareness and advocacy can go a long way in making a kid with diabetes feel empowered.

January 09, 2012

Rent the Runway: Diabetes-Style!

Click this photo, and then LIKE this photo on Facebook!My friend Delaine is amazing.  She's a type 1 diabetic, a trapeze artist, a certified diabetes educator, and a fellow Rhode Islander.  And she's also married to the police officer who brought me sugar-free candy on Halloween one year.  (Best.  Halloween.  Ever.) 

Delaine decked herself out properly for New Year's Eve this year, and as part of that, she rented a dress from Rent the Runway.  And now she's part of a little contest from RTR, where the photo with the most Facebook "likes" wins.  ("Wins" what, we aren't sure.  There actually isn't a prize, as far as we know.  This is just for bragging rights.)

But dude ... she's hiding an insulin pump and a continuous glucose monitor underneath those shiny blue sequins. 

Delaine said:  "I removed the clip from my pump and simply tucked it again my skin and inside a pair of lycra workout shorts. It is just inside my right hip in that photo and stayed there without issue through a fantastic evening of dining/dancing and fun as I rung in 2012."

THAT alone is worth bragging about, because she's healthy, she's safe, and she looks like a million bucks!

So if you could please click that photo over there, or THIS LINK, it will bring you over to Facebook, where you can LIKE the photo and help earn Delaine some well-deserved bragging rights.  She's marking her 29th year with type 1 diabetes in 2012, and I think that's worth celebrating the hell out of.

Go get 'em, Delaine!! 

October 26, 2011

Getting Ready for Diabetes Month.

Diabetes Month is fast approaching, and I've been thinking about this community - our community - and how much it means to me. I was reminded of a poem I wrote back in 2007 about the impact this community has had on my own health and awareness, and I wanted to share it here, because you guys are what matters.  

What Matters (originally published in November 2007):

I live every day with a pump at my hip
A meter close by, and a smile on my lips.

So many moments there are in my day
When it seems that my pancreas gets in the way,
Be it exercise, cooking or sleeping or driving,
I’m constantly checking to keep myself thriving.
And while my fiancé, my family and friends
Support me and hold me and love to no end,
I started to blog because I felt alone -
The only diabetic as far as I'd ever known.
Needing to find others who understood
How a number was scary, how a food could be good.
How I worried my eyes were damaged from cake.
I worried my worries were too little, too late.
How I worried my feelings were strange and unique
And that my diabetes made me some kind of freak.

I wrote my first post, took a great gasp of air,
Hit the big publish button and from out of thin air
My words were set loose to the great world wide web
And I wanted and hoped to hear what others said.
Within just a week I had found several others.
Type 1’s and type 2’s and some fathers and mothers.
These people, they knew, and I felt less alone.
I feared less my future and all the unknowns.
The blogging took off and it chronicled things
Like my job and my friends and my engagement ring.
I poured out my feelings and dealt with my fears,
I let loose my laughter and reigned in my tears.
I felt so much stronger with all the support
Of the people who knew how my body fell short.

When I peel back the layers to what matters most,
It's not about how many readers I host.
It's not about statcounts and not about feeds.
It's not about fame and it’s not about greed.
It’s not about comments or big recognition,
It’s about all the challenges of this condition.
This community knows me where I hurt the most.
It makes me feel normal, supported, and close.

I'm thankful for every day towards good health.
I’m thankful I’m not doing this by myself.
Endless thanks to the people who read these brave writers
And for making the burden we carry much lighter.

 

October 17, 2011

To Palooze.

to palooze: v. the act of people with malfunctioning pancrei and their caregivers coming together for cupcakes, support, and fun

In the last few weeks, I've had the pleasure of meeting some old friends for the first time.  (That may sound like a peculiar sentence, but anyone who is part of the diabetes community and has found themselves immersed in a deep discussion about the emotional impact of this disease with an otherwise complete stranger understands the connection between PWD.) 

A few weeks ago, in Boston, I had dinner with Harry Thompson.  (He's @harrythompson on Twitter.)  Our diabetes is about the same age, and our daughters are, too.  Our spouses are supportive and amazing, and our collective appreciation for a good pun is unparalleled.  We spent a few hours exploring Boston and the North End, and we drank cappuccinos made from an old-fashioned coffee robot.  (More on that some other time, because if I try to explain it here, I'm sure to become confused again.)  But it wasn't weird ... it was comfortable, despite the fact that we hadn't met in person until that night.  Harry is awesome, in every freaking way.  (No photo, though, which I'm regretting.  We just forgot!)

And over this past weekend, I trekked into New York City with Briley and Karen to meet up with Simon and a whole pile of other PWD for what's become this strange Simponpalooza phenomenon.  It's hard to explain how and why people with diabetes forge a friendship that's instant and lifelong, despite differences.  It's harder still to explain to people why a man would want to fly halfway around the world to meet a bunch of strangers. 

But when you see photos, and read people's posts, and see videos, and take into account how much love is found in a disease that hurts so much sometimes, it makes more sense. 

I love that he has, like, a LOGO.
The "tour book," which served kind of as a yearbook for Simon's trip to NYC


Kerri, Jeff, and Briley, and Jeff OWNS this shot.  Owns it.


MOST of the group (because Kelly came running in seconds after the shutter clicked)

Kerri and Simon.  Simon says, "Look happy!"
"Simon says ... be happy!"

Actually, it makes perfect sense.

Thanks for coming to spend time with us, Simon.  And thank you to everyone who writes about the friendships found in the diabetes community.  Diabetes isn't exactly known for "giving back," but the community of people who live with it are

(More photos on Flickr here.)

September 29, 2011

Diabetes Terms of Endearment eBook!

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

July 14, 2011

Coco, Disney, Lilly, and Nick Jonas's ... Mom.

At Friends for Life, several members of the DOC had a chance to meet up with representatives from Lilly (one being the same guy who rode over on the Magical Disney Bus with me from the airport, and he had the most impossibly teeny carry-on bag.  Only a guy could pack business clothes for a week into one, single carry-on.  /digression and also, hi, Adam) to discuss a very cool partnership between Disney and Eli Lilly.

Oh yes, that's right:  Disney has it's own PWD. Her name is Coco.  She's a monkey. (Or "MWD," as Leighann so aptly put it.)  

Others have written about Ms. Coco and her diabetes bracelet of animated glory, but I wanted to chime in and add my excitement.  I grew up with images of Mickey Mouse and Donald Duck as parts of my childhood, and I knew plenty of kids who went to Disney World on vacation.  But I didn't know anyone else who had diabetes.  Now, diabetes has infiltrated the mainstays of childhood memories by becoming part of the Disney gang.  Coco, a monkey who clearly has the same affinity for bows as my daughter, is right there in the thick of the Disney mainstream, and sporting a busted pancreas.  This is awesome, because it gives little kids with diabetes a cartoon character they can identify with, and feel cool about. (And I'm secretly thankful that Mickey or Minnie weren't 'chosen' to have diabetes, since mice are always managing to get cured randomly.)

Part of this collaboration between Lilly and Disney is an update to the Disney Family.com website, featuring editorial and information specific to families with type 1 diabetes.  This, to me, is just as cool as that crazy MWD.  Disney is extremely well-known (see also: understatement of the year) and to have type 1 diabetes featured prominently in their space is nothing short of remarkable.  This is mainstream attention to a disease that was once sorely misunderstood and ignored.  (Now we're just slightly misunderstood and social media'd.)   Now you can visit www.Family.com and check out their diabetes offerings, anchored by the tagline, "Everyday challenges; everyday magic." 

And lastly, as part of this Disney/Lilly partnership (henceforth referred to here as "Dilly," because I can't type those two words over and over again without getting distracted), there's a contest.  "Once Upon a Time" is all about sharing the real stories of life with diabetes, and bringing more families into the magic of Friends For Life.  From the website

"Lilly Diabetes and Disney Online have joined forces to help families with children who have type 1 diabetes see the magic that exists in everyday moments.  It's all part of a new initiative designed to provide understanding and support to families affected by type 1 diabetes."

What happens next is an essay contest where parents of kids with diabetes are encouraged to submit an essay inspired by their child's experience with type 1 diabetes.  These entries will be judged, and the winning entry will score air fare, hotel, and conference registration for a family of four to attend the 2012 Friends for Life conference.  

To top it off, Disney and Lilly have added some celebrities to help raise awareness of their Once Upon a Time contest.  One of these celebrities is the mother of OMG NICK JONAS himself, Denise Jonas.  I'll be speaking with her this afternoon, and will share her take on all of this with you later today!

I am impressed.  This isn't just a drop-in-the-bucket kind of advocacy effort so a company can check their "We did our diabetes advocacy due diligence" box.  This is real.  A real Disney character with type 1 diabetes.  A real chance for a family to enjoy the magic of both Disney and Friends for Life.  I love this.

Obligatory disclosure:  I attended an information session hosted by some members of the Lilly team, and they filled me and some of my fellow PWDs in on this partnership information.  Per usual, my opinions are my own.  As are my typos.  

July 13, 2011

Finding Diabetes on Twitter.

One of the Friends for Life sessions that I co-lead with my favorite tall guy, Scott Johnson, was about finding diabetes support through social media.  (More on that session this week, but I wanted to get this post up today because there's a diabetes chat that takes place on Wednesday nights.)  While that session had it's own discussion points and a broad definition of what social media really is, the same question came up over and over again:

"Twitter?"

It wasn't even a whole question, more like a word thrown out to the crowd and lingering there, confused about where it should roost.  Twitter is a completely and utterly confusing concept to people who aren't involved in that method of communication - hell, it's chaos for those of us who are familiar with it, too.  But aside from questions about how to start a community or blog, and how control sharing on Facebook, some people really wanted to know how to navigate the muddy waters of Twitter.

In efforts to answer some of those questions from the session, I wanted to give a little Twitter & Diabetes 101 here, with links to resources, to help those who want to find people talking about diabetes on Twitter.  Here's the crash course:

What is Twitter?  Twitter is a method of online communication where you share status messages in 140 characters - and no more than 140. It's sharing in snippets; it's microblogging.  It's borderline annoying because you end up completely over sharing ("I thought about eating a ham sandwich in the alleyway ... but then didn't."), but it's a very unique, very real-time, very insightful way of connecting with people. 

  • Why would I want to share these details online?  That's a really good question.  Some people are very comfortable sharing details of their life, and links to things they think are interesting, which is where Twitter comes in.  It's like an RSS feed for your brain, and it helps lead you to new info on topics that interest you and from people who do the same.  (If you're concerned about privacy, you can always keep your account "locked" instead of "public.")
Hashtag central
Diabetes-related hashtags include word/phrases as obvious as "diabetes" but may also include things like "#ffl11" and "#sweatabetes."
  • What is a Tweet?  A Tweet is one, single status update from a Twitter account.  Oh, and it's also the sound that a bird makes.  
  • What is an @reply?  When you put the "@" symbol in front of someone's user name, it tells that person that the Tweet is directed at them.  It's like sending a 140 character email, in public.  (Also, you know if a Twitter account is shifty when they don't have any @replies and/or aren't following anyone.  Twitter is a conversation, not a billboard.)
  • What is a DM?  A DM (or "direct message") is a 140 character private message that you can send to a fellow Twitterer.  You can only direct message people who are following you back.

How do I join, and what do I do there?  To sign up for a Twitter account, go to Twitter and register.  You'll sign up, you'll be shuffled to your homepage, and there you can post your first status update, find people to follow, or just lurk on other people's accounts.  

So I'm on Twitter.  How do I find my fellow PWDs?  Okay, so once you're on Twitter, now you can dive Tweet-first (?) into the diabetes community there.  Finding your fellow PWDs can seem challenging, but there are tricks to help you sniff out the pancreatically challenged and those who support them. 

  • You can use Twitter Search to seek out the diabetes community by searching for specific search terms or hashtags.  Try searching for something as simple as "diabetes," or something as specific as "Dexcom."  You can also conduct searches right on the Twitter homepage, like for "diabetes."

  • You can also use the mother of all diabetes hashtags:  #dsma.  "#dsma" stands for Diabetes Social Media Advocacy, and it's the brainchild of Ms. Cherise Shockley.  On Wednesday nights at 9 pm EST, hundreds of people with diabetes log on to their Twitter accounts and crowdsource answers to questions asked by the DiabetesSocMed Twitter account
It's pretty simple:  The @DiabetesSocMed account asks questions and numbers them, and then when people respond, they just answer with the question number and the #dsma hashtag in their Tweets.  For example:
An example of the #dsma Twitter discussion questions
There's the question (Q1) and my answer, tagged with both "Q1" and "#dsma."  The only trick is that during the actual #dsma chats, there are many participants, so there are many questions and answers streaming at once.  It can be a little overwhelming at first, but after a few run throughs, you'll be a pro.
  • And even though you're using Twitter, you aren't limited to using "just Twitter" to send out or read your Tweets.  There are a lot of third-party applications for Twitter that you can download to your desktop or use a browser for.  Here are a few of the ones I use:
  • Tweetdeck.  This is my favorite application and the one I use most for Twitter.  It's clean, easy to use, and runs pretty seamlessly on my laptop.  
  • Seesmic.  I used to use this one all the time, but I kept blowing out my API.  (What does "API" stand for?  Available Peanut Index?)  Seesmic can also be used to update your Facebook and Twitter status, so it's kind of handy for all things social media.  (Tweetdeck can, too, actually.)
  • TweetChat.  This is a web application where you can type in the specific hashtag you want to follow (for example: #dsma) and all of the Tweets tagged with that hashtag stream on the TweetChat page. 
  • Twitpic.  This app helps you share photos on your Twitter feed.  You can take photos on your phone or upload them from your desktop and ship them straight to your Twitter stream.  (There is also a pile of apps for Twitter using your smartphone, but I know what I know, and I have no idea which ones are good or bad.  Consult your local TechNerd for some details and a cupcake.)

Phew!  Crash course on Twitter and finding your fellow PWDs?  There's at least a start.  I hope this helps, and if you're looking to jump right in, you can join the #dsma chat tonight at 9 pm - the only thing we're missing is YOU.  Join the 140 character conversation ... and make sure you have coffee on hand.  It's the most whirlwind hour of diabetes discussion on the web. 

(And I'm adding a diabetes Twitter list to the blogroll page, so if you're a PWD with an active Twitter account, leave your Twitter handle in a comment and I'll add you to the list!  You can find me on Twitter at @sixuntilme.)

Visitors since November 7, 2005