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Posts from the ‘Diabetes Advocacy’ Category

World Diabetes Day 2016.

It’s World Diabetes Day.  And how do I feel, after 30 years with type 1 diabetes under my belt (and above my belt and in every organ and all over my face)?

LUCKY.  Effing lucky.  Because according to the demands of my body, I should not be here, but because of science and access, I am alive.

I clicked on the Google homepage today and saw that, finally, after years of asking and hoping to see Google acknowledge the diabetes community through a Google doodle, our community was highlighted on the homepage.  There we were, represented in retro fashion, alerting the world that people with diabetes would be absolutely sunk without the contributions of Dr. Frederick Banting almost 100 years ago.

If I had been diagnosed before Banting and his crew changed the diabetes world, I would have died, my body starving to death as a result of not making insulin.  Insulin is crucial to my survival.  Seeing 90 days worth of insulin collected in my kitchen is pretty damn humbling.  What keeps me alive is stored next to the butter in my fridge, and that’s beyond humbling.

I do not take this life for granted.  

Today, on World Diabetes Day, more people are paying attention.  Even this whole month, with the focus on diabetes, people are tuning in and listening. We have their ear.  So grab them by that ear and remind them that diabetes month is November, and diabetes day is today, but diabetes is EVERY DAY for people touched by it.  We’ll still be stashing our butter compartments with insulin in December, and every December after that.

How can people help, way past today and this month?

I’m glad you asked.

People can donate to the International Diabetes Federation’s Life for a Child program.  They can also gear up for the Spare a Rose campaign, which takes place every February.  If your butter compartment is stashed with insulin, consider those who don’t have access and please help.  You can donate directly by clicking here.

They can also explore some of the diabetes advocacy organizations, like the JDRF or American Diabetes Association, or some of the more grassroots groups like Children with Diabetes, the Diabetes Hands Foundation, Riding on Insulinthe Betes Organization, Nightscout Foundation, Diabetes SistersDPACConnecT1D, the Diabetes Community Advocacy Foundation, DOColors, or Glu.  Or any of the other ones I haven’t listed, because there are many.

Participate in the Big Blue Test, or the World Diabetes Day 24 hour chat (#WDDchat16).  Or share their stories through the JDRF, ADA, or IDF campaigns.  You can do that RIGHT THIS SECOND.

If healthcare professionals are checking in on this post, please consider recommending the diabetes online community as a resource for your patients.  AADE President Hope Warshaw has created a one-sheet to help HCPs jump into the space, and there’s always the #DSMA chats that take place on Wednesday nights at 9 pm eastern.  Peer-to-peer connections can make all the difference for your patience.  Please encourage exploring the DOC as an option for your patients.

And give.  Give financially to organizations that lift the message you want lifted.  Give your time to efforts that improve the diabetes experience.  Give your story life outside of the diabetes bubble and give the gift of education and information to people who aren’t familiar with diabetes.

Happy World Diabetes Day, you guys.  Continue to educate, to change the game, to disrupt, to make a difference.  Continue being you, making crummy use of insulin but making an enormous difference for people with diabetes.  <3

 

Diabetes Month: Ask Me About My Diabetes.

At 4 am, when I woke up to hang out with my little apple jack to feed him, my blood sugar was 108 mg/dL.  He ate and we both went back to bed.  When I woke up at 6.30 am, my blood sugar was somehow 221 mg/dL.

What the hell happened?!  Usually, breastfeeding makes my blood sugar drop, not rise.  Was there cortisol on board due to not sleeping?  Does my morning basal rate need to be tweaked again, now that I’m 10 weeks postpartum?  Did the potato salad go bad and exact revenge on me?  If two carbs left the station at 4 am, one going into my mouth and the other going into the baby, would they arrive on my meter at the same time?  Bonus point if you show your work.

Diabetes is the ultimate math problem.

This diabetes month, I want to make an effort to “show my work” so that folks both in and outside of the diabetes circle have a better sense of what it’s like to live day-to-day with diabetes.  Which brings me to this:

After posting this image as my Facebook profile picture, hoping people would ask questions about diabetes, my friend Chris Snider (<– always advocating, always inspiring) connected with me and after some quick back and forth, #amadiabetes came to be.

The hashtag stands for “ask me anything” about diabetes and in the spirit of spreading awareness and empathy, we’re encouraging our friends, family, and followers both with and without diabetes to ask whatever questions they have about the life with diabetes experience. The goal is to strengthen our community, educate others, and contribute to a culture of empathy. Check out #AMAdiabetes to see the variety of responses to questions, taking note that, as always, your diabetes may vary.

So feel free to ask away.  Ask me.  Ask Chris.  Ask others.  Ask yourself.  Be all ask-a-rama all over the place and let’s learn from one another and educate together.

Thanks, Diabetes!

Feeling bummed about the bullshit of diabetes?  Me, too.  I needed to find a few things to appreciate about this disease before I tried to throw it off the deck.  So here we go.  A quick round of “Thanks, Diabetes!

  • I had to get my flu shot two weeks ago.  The needle was big and went right into my shoulder muscle but I did not care as I do needles all the time.  NBD.  Thanks, Diabetes!
  • I mentally smirk every time I get on the highway and see the speed limit sign:  65.  Always makes me want to throw glucose tabs at the pavement.  Giggle well spent.  Thanks, Diabetes!
  • I had a long, drawn out phone call with someone at my insurance company’s office, all in pursuit of confirming coverage for some high-risk related ultrasounds when I was pregnant.  The woman who had to deal with me was extremely nice and helpful, and she made me laugh out loud more than once.  Were it not for my stupid disease, I never would have chatted with this awesome lady.  Thanks, Diabetes!
  • I was able to efficiently remove a splinter using a steady hand and a sharp lancet.  Thanks, Diabetes!
  • This week, I’ll have a chance to hang out with friends who might not make insulin but who definitely make the world a better place.  Thanks, Diabetes!
  • The charging cord for my t:slim pump happens to fit the charging port for the bluetooth speaker whose charging cord recently up and disappeared.  Thanks, Diabetes!
  • I forced myself to join some friends for a walk this morning in pursuit of bringing my blood sugar down just a little bit.  Had I not put blood sugars into the top priority bucket, I wouldn’t have had the opportunity to spend a little quality time outside in the sunshine with friends.  Thanks, Diabetes!
  • I bought two bags of candy corn and completely considered them a “medically necessary expense.”  Thanks, Diabetes!

Beyond Type 1: LOVE IS ON.

Despite being up to my eyeballs in parenting stuff [insert baby who doesn’t sleep at all at night plus a big sister who had her first ear infection over the weekend here], I have been online.  And I’ve totally seen the Beyond Type 1 black-and-white photo’d community posts scrolling by, asking for donations and awareness for the Revlon LOVE IS ON Million Dollar Challenge.

I’ll admit that I was a little confused at first.  If Beyond Type 1 was aiming to win a million dollars from this campaign, why were they fundraising?  Of course the goal is to earn $1 MM for Beyond Type 1 courtesy of Revlon, but why are people fund raising if the goal is to win the big prize?  Is it to show how much the community can raise first?  Also, what does Beyond Type 1 plan to spend the prize money on?  I’ve been very impressed by the presence that Beyond Type 1 has created in the diabetes community, but I’ll admit that I’m not exactly sure what the organization does, or plans to do, outside of awareness.  (And I’ll also admit that I haven’t been focused on diabetes stuff in the last seven weeks, making me unaware of The Obvious lately.)  I needed to learn more.

So I emailed with Mary Lucas, Community Partners and Programs Manager for Beyond Type 1, and she provided me with some clarity for my confusion.   (All italicized answers below are from Mary, who is patient beyond patient when it comes to replying to multiple scattered emails from this exhausted new mom.)

From Mary:  

The Revlon LOVE IS ON Million Dollar Challenge is a six week challenge that 150 charities were invited to participate in. At the end of those 6 weeks, the nonprofit that has raised the most money total is awarded an extra $1 Million from Revlon. There are smaller consolation prizes for second and third. Every charity still gets to keep their money raised, it is just an extra added bonus. On top of that, the nonprofit that wins would be accepting a comedically-sized large check in a very public setting with media, etc. and would subsequently drum up a ton of press and hype around that charity and the cause associated with it. It would be really great to have a diabetes charity up there accepting the $1 Million from Revlon, as it would really help get T1D into the mainstream press and media.

As a non-profit, all our operations are covered by leadership and founding friends, so 100% of all money donated to us goes back into our portfolio of programs and investments.   This means we are fully operational funded, so $1 in to us is $1 back out into the diabetes community, not 75 or 80 or 90 cents, but the entire dollar, which is pretty rare for a non-profit. So far, we have invested in both our own native programs (that we currently offer for free for everyone in the type 1 community) such as our Snail Mail Club, the App, Education Initiatives and Resources, Camp Sessions, and the DKA Awareness Initiative we will be rolling out nationwide in just a few weeks.

We have also given grants to organizations working on cure efforts such as ViaCyte and the DRI, technology efforts such as Nightscout and Tidepool, and community /education /advocacy efforts like The Human Trial Film, Riding on Insulin, Marjorie’s Fund, and T1 International. The grant we gave to Marjorie’s Fund last year actually helped open a new diabetes education center in Uganda this summer! (To learn more about all of the grantees, etc. you can visit this page on the website.) We like to fundraise for a variety of things across the areas of educate, advocate and cure — we want to help people living with T1D today while still researching and working towards a cure for tomorrow.

If we won the Revlon Challenge, the extra money would be used not only to help fund our native programs and keep those going, but would also enabled us to open up applications for grants once again.

The Revlon Challenge also has some cool opportunities and bonus challenges they do throughout (such as matching donations, etc.) and we also have done some fun things like offering a Percy the Plushy Snail (our Snail Mail Club Mascot who is not for sale yet but is pretty much the cutest thing ever – he has an insulin pump!) for everyone who donates $50 to Percy’s fundraising page. And of course right now are doing the Nick Jonas meet and greet giveaway – so people have some cool opportunities to win extra stuff!

Thanks for all of the information, Mary!  Now I have a better idea of where our donation is going when we chip in for the Million Dollar Challenge.  Here’s hoping Beyond Type 1 is able to win the challenge and bring diabetes into mainstream discussion.

THE CONTEST ENDS OCTOBER 26th, SO IF YOU’RE GOING TO GET INVOLVED, NOW IS THE TIME!  🙂

Type 1 Origins: Talking Comic Books with Partha Kar.

Dr. Partha Kar

Dr. Kar has been a Consultant in Diabetes & Endocrinology at Portsmouth Hospitals NHS Trust since 2008 and the Clinical Director of Diabetes from 2009-2015.  One of his main areas or passion is in helping to redesign diabetes care in an attempt to integrate chronic disease management across primary and secondary care.  He’s won many awards and has helped patients with diabetes across the spectrum.  I’ve been following UK endocrinologist Dr. Partha Kar on Twitter for ages now and have been watching the development of his type 1 diabetes-centric comic book with excitement.  Just recently, the comic was released into the wild.

The superhero twist that wraps around the diabetes narrative makes the idea all the more interesting.  According to the comic intro, “As comic and superhero fans, it seemed to us that there were some parallels between the times when a type 1 diabetes diagnosis is made and when a superhero discovers their powers for the first time. There is often shock and surprise among the feelings experienced in both situations, followed by acceptance and adaptation.”

I couldn’t agree more, and was thrilled that Dr. Kar took a few minutes of his time to answer some questions about his work, the comic, and the DOC.

–   –   –

Kerri: Thanks for taking the time to answer a few questions, Dr. Kar! Can you give me a little background on your involvement with the diabetes online community, and how diabetes has touched your life, personally?

Dr. Kar: Social media and interaction with the DOC probably has been the biggest education I have received in my career. Its been fun, enjoyable and educational and I have enjoyed so much of it! Personally, this is my life, my work, my job and everyday in one way or another, diabetes always affects what I do – much needs to improve in my view. I see folks struggle every day with little things – somehow it would be nice if even a little bit of that could be improved.

Kerri: I’ve been watching the development of your T1D-centric comic book with great interest from the US. Can you tell me a bit about why you created this comic?

Dr. Kar: Comics are great source of education-as far as I am concerned – I have always loved how they have explored the issues of social isolation (X men); teenage angst (Spiderman) etc. and has always been one of my loves of life. Somehow it seemed natural to join that and diabetes together – it felt like a medium which hasn’t been used much – and perhaps could help with showcasing type 1 diabetes and raising awareness.

Kerri: What makes the narrative of diabetes so important, in your opinion?

Dr. Kar: Diabetes is and always has been a multifaceted condition – ignorance towards it – or simply labeling it as a condition of “being unhealthy” is wrong on so many levels, let alone the different types which are totally different entities. Its important we make that clear.  Type 1 and type 2 diabetes are fundamentally different with fundamentally different needs – it’s important as HCPs that we help in raising this awareness too.

Kerri: Who helped you bring your creative vision for the diabetes comic to fruition?

Dr. Kar: As regards the comic book, big thank you to many individuals. I don’t have type 1 diabetes – it would be silly as fellas wrong for me to do the narrative – I wouldn’t even know what it is to have a hypo. Thus, my huge thank you to Andy Broomhead, Jen Blackwell, Laura Cleverly, and Joe Griffiths who helped create the story board. Danny Mclaughin from Revolve Comics was the dude who brought it all to life – while my co-conspirator was Dr. Mayank Patel- we have always call each other Bruce & Clark. I will let you figure out who is who!

Kerri: What are you hoping to accomplish with this piece? And what part of the comic are you most proud of?

Dr. Kar: Raising awareness is a key theme, as well as maybe helping to explain type 1 diabetes to someone newly diagnosed slightly differently. My analogy is that its perhaps like a super power – but not one which people want – sort of like the Hulk, who spends his entire life trying to find the cure but along the way, learns to live with it, sometimes control it … a super power he never wanted in the first place. Proudest part? Perhaps the panel where the character meets someone he knows and understands he is not “alone.”

Quality nod to S.H.I.E.L.D.

Kerri: Outside of the comic trade, I know you’re actively involved with the diabetes community as a healthcare professional. What is your background as a healthcare provider, and how does that background intersect with your creative outreach efforts?

Dr. Kar: I like trying different things- for example a one stop shop for those with type 1 diabetes or indeed TED style talks. I like changing things, shaping new things, exploring new horizons … I suppose I like a challenge and for certain, improving type 1 diabetes care is no small one. I have a huge desire to improve type 1 diabetes care – let’s see where it takes me!

Kerri: How can readers of Six Until Me check out your comic book? And also, how can they connect with you on social media?

Dr. Kar: Comic book is free! Go to Revolve Comics and feel free to download- use it, spread the word and hey if you like it and want more, come back with ideas! Who knows – I have ideas swirling in my head about turning this into an animation … early days but who knows!

As regards getting in touch- just follow me on Twitter (@parthaskar) and feel free to poke, ask anything you want. As I say to all and sundry, if asked with respect, no question is tough- if I don’t know it, I will be the first one to put my hand up. I look forward to interacting with as many folks with T1D as I can.  As I said, it’s always such a fab learning opportunity and I genuinely enjoy the chats.

 –   –   –

Thanks for chatting with me, Dr. Kar, and I’m looking forward to more from your team of superheroes!  To download the comic, visit Revolve Comics and you can grab it for free.

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