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Posts tagged ‘type 2 diabetes’

#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!!

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.

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!!

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

Masterlab: Tides are Rising.

In the last ten years, the DOC has evolved from a small pocket of voices to an entire choir that can’t be housed in one town, or state, or even country.  I love seeing more hands raised and more people saying, “Me, too!” and providing support and understanding for one another.  Patient stories matter.  Our stories matter.

The DOC is also becoming more diverse, more inclusive, and more action-oriented, moving these online conversations to offline endeavors, making a tangible difference in the world of diabetes.  I’ve seen the start of this kind of change, and the tides are rising beautifully. And with it go all of our boats.

But there’s more work to be done.  Which brings me to Masterlab.

In a few days from now, dozens of diabetes advocates will bring their voices to sunny Orlando, Florida to participate in the Diabetes Hands Foundation’s Masterlab program, which is about “building a sense of what is possible and creating a formula for successful diabetes advocacy in the future.”

My response?  Oh hell to the absolute yes.  I asked Manny what the impetus was behind Masterlab, and he said that he’s hoping to address the “squeaky wheel” mentality of advocacy … namely, helping diabetes advocates make the wheel squeak more.

“We are in dire need of people who will tell their story, who will come out of their caves and tell to FDA, CMS, NIH, or your-favorite-alphabet-soup, the ways in which a particular drug, device, therapy, or research affects their lives. Maybe it’s not the A1c or the cardiovascular risk, but being able to live through less hypos or not having to take a shot. But we need more,” he said.

“We need advocates willing to speak where their voices need to be heard. We need people who can wear their passion “like a sports coat” (as Glu’s Dana Ball would say), balancing it with solid data to support their views packed with emotion. But we need more.”

The Masterlab takes place on July 2nd at the Orlando World Center Marriott from 7 am – 5 pm and is free for anyone who has already registered for the Children with Diabetes “Friends for Life” conference.  (If you would like to register just for Masterlab, the cost is $50.  You can register here.)  The full agenda is listed here, but if that’s tl;dr, the topics include Today’s Diabetes Advocacy Environment, What Has Been Accomplished by Other Patients (and How), Getting the Attention of Decision Makers, and Mobilizing the Diabetes Community, plus several others.

Manny added, “We need everyone behind the voices speaking on behalf of the community, providing an echo effect, to amplify our voices and make sure that there is not a single corner in any government office that has something that it could be doing to help more people touched by diabetes that doesn’t hear about it.  Putting in place the building blocks to start making this vision a reality… that is what Diabetes Advocates MasterLab is about. I hope the event sells out… because we need more.”

Click here for details on Masterlab, and please register if you’re coming to FFL, or if you live in the Orlando area.  Register soon, as space is limited.

Your voice matters.  Use it.

A Day Late, an Islet Short.

I missed the last day of Diabetes Blog Week, but I’m determined to follow through on the prompts, because I love being part of this community.

The last prompt is to highlight some of the work we’ve loved reading this past week:  “As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment that made you smile. Anything you liked is worth sharing!

Here are a few of my favorite D-Blog Week things:

Insulin is not an enemy or a punishment!”

I dip my hand in and my fingertips taste like iron.”

How do I cope? Rip that fucker up.”

I weathered the storms each time. I likely grew stronger from each but the memories they don’t fade. So while ugly blood sugars, ignorant people, sleepless nights, and pure exhaustion get me down on any given day or hour it is the memories that trigger the real pain.”

“Finally, finally, my blessed end is nigh. Again, I was thrown away, but this time actually made it into the basket.”

It’s something that needs to change.”

Diabetes Blog Week has opened my eyes to many new writers and perspectives, and even though it may take me weeks to work through all the links and read everything, I’m so grateful for the opportunity to learn from and connect with my peers.

 

Learning from my Peers.

“All those stereotypes about type 2 diabetes?  I used to believe them, and I worked to distance myself from them,” I said.

Cue my blush of shame and embarrassment.

“I’m sorry I thought those things.  And the main reason I don’t feel that way anymore is thanks to the advocacy work of my peers with type 2 diabetes.  People who are sharing their stories and helping me understand what their lives with type 2 diabetes are like.  Rachel, just through blogging, has taught me so much.  Thank you, Rachel, for helping me learn.”

It felt liberating to say it out loud, even though I was ashamed to admit it.  And it felt even better to be able to thank Rachel in person.  I was at the Diabetes Sisters conference, taking part in a session addressing misconceptions within the diabetes community, not just outside of it.  It felt like a safe, and most appropriate, place to let go of some guilt.

In the last ten years, I’ve learned a lot about diabetes through connections in the DOC – my own diabetes, of course, but also so much about how diabetes is managed and wrangled in by my peers.  I’ve read extensively about struggles to lose weight, lower A1Cs, have babies, develop do-it-yourself pancreases, and the emotional chasm of depression and diabetes.  The things I have learned from my peers have changed the way I view diabetes.

But I also learned to expand my definition of “peers.”

Growing up, my peers were the other kids living with type 1 diabetes, and transitionally the adults with type 1 diabetes.  It wasn’t until I was involved in diabetes on an advocacy level that I realized, “Hey, the families caring for people with diabetes are my peers.  As are the people living with type 2 diabetes,” among others.  But it’s not like I stumbled into this revelation – I was taught by reading the experiences of people outside of my type 1 “bubble.”  And I needed to be schooled, because the generic information regarding type 2 diabetes doesn’t even begin to scratch the surface of the disease.

I’ve learned so much reading Sue, and Sir Bob, and Kate, and Rachel.  They’ve shown me how to put type 2 diabetes into context, and if they hadn’t shared their experiences, I wouldn’t have attempted to understand the other side of this diabetes coin.  I wouldn’t have learned so much.

I would have remained ignorant.

Thank you the people with type 2 diabetes who are sharing their stories and helping change the public, and the private, perception of their condition.

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