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Posts from the ‘Diabetes Advocacy’ Category

#DOCasksFDA – Your Feedback is Needed, DOC!

THIS IS THE LINK TO THE SURVEYRead below for more information on the virtual discussion between the diabetes community and the FDA, and how your input will shape that discussion, and potentially our future.

“On November 3 from 1pm-4pm EDT, the Food and Drug Administration (FDA) and the diabetes community will host an unprecedented event to discuss unmet needs in diabetes. As a community, our job is to present the numerous challenges we as patients face each day, and we need your opinions to be a part of this discussion! Please fill out this short survey to share your thoughts on what’s important to you when it comes to living with diabetes. Your feedback will go directly to FDA and help influence the conversation on November 3.

Please answer the questions that follow as honestly as you can. Your answers could affect the way the FDA perceives unmet needs in diabetes, and ultimately, how it reviews the risks and benefits of new drugs and devices.”

THIS IS THE LINK TO THE SURVEY AGAIN.  IT IS IN ALL CAPS BECAUSE IT IS IMPORTANT AND YOU ARE IMPORTANT AND YOUR OPINIONS ARE IMPORTANT.  As a community, we need to raise our voices.  Please show the FDA that we are many, we are empowered, and we are loud.

Link coming soon so that you can register for the discussion, but in the meantime, please fill out the survey and share it with your DOC friends.  And thanks!!

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!

All About that Cure.

Ever stumble upon an ear worm while you’re waiting in the airport?  For me, it’s usually something like “On the Wings of Love” that ends up embedded into my brain for hours on end (thank you, Mr. Osborne) but yesterday morning it was “All About that Bass.”  Except it was with a diabetes twist, thanks to a JDRF walk team in Tucson, AZ:

To support their team, visit their walk page.  In the meantime, jam out to their earworm.

 

February Comes Fast.

Chris always sums up Spare a Rose in the same way:  “It’s so simple. So sticky. And so important.”

Because it is.

February is fast-approaching (Don’t act like you don’t know – it’s October today!  Time refuses to stand still.) and now is the time to start thinking about how you and your company can participate in the Spare a Rose campaign next Valentine’s Day.  February 1 – 14th.

Yeah, I said you and your company.  This topic came up on a call a few months ago, about opening the campaign to offices and employers.  “Earn a casual dress day for your office!” sort of sentiments (except when I pitched this idea to a super cool Austin PR firm, it sort of backfired because their dress code is already casual, so I recommended a Wear a Tux to Work day).  Put an empty flower vase on the front desk with a sign that says, “Best bouquet of roses I’ve ever received!!” with a link to SpareARose.org.  There are a lot of fun ways to bring awareness and funding for Life for a Child.

Also, now is a perfect time to bring up Spare A Rose to media outlets who might be planning their editorial calendars for next year already.  If you’d like to see the campaign highlighted in your magazine of choice, reach out to the editor and let them know about it.

You can sign up to receive updates on the campaign here.

You can learn more about the In My Office ideas here.

Want some beautiful images?  Here you go.

Here’s a handy FAQ about Spare a Rose.

It’s a simple sentiment with tremendous outcome:  spare a rose, save a child.  Thanks for thinking ahead to February and being part of the solution.

 

Seeking PWD Peers.

Two weeks ago, I was in Vienna for the third annual European Animas Blogger Summit.  (I’m a blogger, and I have a working relationship with Animas.  Only missing the European part, and I can’t even pretend because I was once told that my attempt at a British accent was akin to Dick Van Dyke’s Mary Poppins attempt.  So, no.)  Other folks who were in attendance have written about their impressions and take-aways, but the discussions we had can’t be concisely covered in a blog post.  It would take several blog posts.

So, in keeping with that theme, this blog post is centered around one of the discussions that embedded itself into my head:  connecting with PWD who are living with type 2 diabetes.

It started with a conversation about the #walkwithd campaign.

“The Walk with D campaign is about showing people what diabetes is really like, peeling back the stigma and reinstating dignity.  We do this already through blogs and Twitter and Facebook updates and all of the photos we share with our community and society as a whole.  The hashtag is simply a way to link some of these discussions, and to share more.  But, in looking around the room, I see a lot of kindred spirits who are dealing with type 1 diabetes.  Where are the type 2 voices?”

I don’t know much at all about life with type 2 diabetes. Sure, I can look it up on dLife or WebMD or some other resource that gives a high-level definition of type 2 diabetes, but that doesn’t give me a sense of what it’s actually like to live with type 2 diabetes.

My lack of perspective used to be rooted in straight up ignorance.  Diagnosed with type 1 diabetes as a child, I actively sought to separate myself from my type 2 peers because I didn’t want people thinking “I did this to myself.”  And I have to put that statement in quotes because it’s such a crummy one, now that I know so much more about the differences and similarities between all types of diabetes.

It’s difficult to talk about how I felt when people lumped type 1 and type 2 together.  I’m embarrassed to admit these things.  The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

And that’s the part I truly want to better understand.  How does it FEEL to live with type 2?

Rachel at Refreshing D was one of the first people who had type 2 diabetes who I really got to know.  Through her columns at dLife, her blog, and through becoming friends, I had a reliable window into life with type 2 diabetes.  I don’t know if I can properly articulate how much she has taught me, or thank her for being brave enough to share her story.  With Rachel as my gateway to understanding type 2 diabetes, I connected to and learned from people like Travis, Sue, Kate, and Bob.  People who live with diabetes – just not the type I’m familiar with – but who I need to better understand in order to best understand this community.

“I wish more people with type 2 would raise their voices.  How can we encourage them to?  How can we empower them to?”

The discussion during the blogger summit was frustrating in that none of us had a clear answer, but we realized that the responsibility for creating an empowering and inviting environment was on the DOC, both globally and in our respective countries.  We, as people with type 1 diabetes, are smaller in number in society but we tend to dominate the Diabetes Online Community, and I think it’s up to us to help pave the way for people with type 2 diabetes to feel comfortable coming out of their diabetes cave and sharing their perspectives.  Stigma runs rampant regarding diabetes, but we can help change it from the inside by getting to know our peers.  Finding what unites us can help us better understand one another as people and can help us all feel like we’re part of a community that has our back.

If you’re living with type 2 diabetes and you’re reading this post, please share your journey.

I walk with diabetes, but I don’t walk alone.  And neither do you.

CGM in the Cloud and All Over the Web.

diaTribe has posted a new column about CGM in the Cloud and the why (and why not) of clouding your Dexcom data, and thanks to a lot of input from people in the diabetes community, there are a dozen different perspectives.  Click over to diaTribe for a read.

And diaTribe isn’t the only site talking about CGM in the Cloud this week.

Why wait?  #WeAreNotWaiting.

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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