Tagged: type 2 diabetes

The Diabetes UnConference DEADLINES

Hi, you.

Yes, you. I’m talking to you with the diabetes.*

Wanted to give you a quick update on what’s going on with The Diabetes UnConference. (And if you don’t know what it is… please go to www.DiabetesUnConference.com and learn about the first multi-day peer-to-peer idea exchange for ALL adults with diabetes (Type 1, Type 2, Type I want to talk about my diabetes…) being held at the Flamingo Las Vegas from March 13 - 15, 2015.

Room Block Deadline: February 12, 2020

1145DB10980204DD1A48CB84162B3570Book your room now.

The super-duper low room rate at The Flamingo Las Vegas, where the conference is being held, is only available until February 12, 2020. (This means you can count the days left on two hands if you have all ten fingers. If you don’t, well… borrow.)

After that, they release the room block to the hoards of basketball fans who will descend on Las Vegas for March Madness. (We root for Team Diabetes UnConference. We are undefeated.)

Don’t get caught paying a stupidly high rate for a room that you can get for a song (if that song costs $69.00+applicable tax and fees) through The Diabetes UnConference room block. Check out the information about The Flamingo Las Vegas here. And book your room here.

Attendee Registration Deadline: March 1, 2020

un-diabetes-conference-fullcolor-iconEven if you aren’t planning on staying at the hotel, please register by March 1st. We won’t be able to accommodate walk-ups, as head counts must be given to catering and for the incredible Dexcom sponsored High Roller event. I would hate for anyone to not be able to participate because they waited until the last minute. I can’t “squeeze you in”. Don’t miss out.

Why Should You Come To The Diabetes UnConference?

You can learn why I think you should come. Watch this interview where I make a lot of funny faces and answer questions (thank to TuDiabetes for the hilarious chat!):

Of course, you don’t have to take my word for it. Take their words:

  • DiabetesMine’s words 
  • A Sweet Life’s words 
  • Kerri Sparling of Six Until Me’s words
  • Stephen of Happy-Medium’s words
  • Rhonda of Fifteen Wait Fifteen’s words
  • Diabetes Daily’s words
  • Heather of Unexpected Blues’ words
  • Kelly of Diabetesaliciousness’ Words

We want you to be there. We want you to feel like you can talk openly about diabetes without judgment and learn from others. We want you to join us for the crazy, zany, beautiful things that will happen.

Don’t miss out. We don’t want to miss you. 

*And you with the desire to help those with diabetes. We love you, too. While you can’t join us this year, you can help spread the word. Don’t worry… we have plans for you to come next year!

un-diabetes-conference-fullcolor-h

I Don’t Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

Your 2015 Diabetes Conference Calendar!

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After not being able to find a single source for diabetes events and conferences that might be of interest for those who have diabetes and/or advocate for diabetes, I decided to create one in 2014 - and we’re continuing with a 2015 calendar for all diabetes conferences and events that you might be interested in attending.

Ta-da.

Please note that this is U.S.-centric, as I currently live in the United States. (Most of me. My pancreas is currently on the lam somewhere where it cannot be extradited.) However, I have added some international conferences. Most of these can be attended by the hoi polloi, but some do require a medical designation/degree (although a press pass may provide entry). These are regional or national shindigs, not local groups or walks. 

If there is one that I have missed, please notify me at theperfectd [at] gmail [dot] com so I can add it. I will be updating this calendar throughout the year so I suggest you bookmark this page now. (Go ahead. I’ll wait.) 

Click on the title of the conference/event for the website link/additional information.

January

Winter Slipstream 2015 (Connected in Motion) January 16 - 18, 2015 -  Camp Kandalore, Algonquin Highlands,  Ontario, Canada 

If you’re sporty and love The Great White North (to which the latter I can wholeheartedly attest), then go hang out with other Type 1s and do some cold weather athletic stuff. Connected In Motion is an amazing organization that will hopefully continue to do a lot of amazing work now that the U.S. based diabetes athletes organization, InsulinDependence, has closed its doors.

51st Annual Clinical Diabetes and Endocrinology Conference (National Jewish Health) January 23 - 27, 2015 - Snowmass, CO

February

ADA Research Summit Maryland 2015 February 7, 2021 - Towson, MD

The American Diabetes Association, Maryland Chapter is pleased to present a day of learning and interacting with world renowned scientists and clinicians focused on finding cures and better treatments for diabetes. This is free and open to the public, but only the first 220 registered can attend.

TYOCD (Taking Control of Your Diabetes) February 7, 2015 - Augusta, GA

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate!

American Diabetes Association (ADA) Expo February 7, 2021 - Denver, CO

The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)

EASD Diabetes Technology Meeting 2015 February 11-12, 2015 - Düsseldorf, Germany

This meeting, held not in the United States, will present “top level research” in all areas of diabetes technology. They claim that they will also present a joint statement from the ADA and EASD on insulin pumps.

8th Annual American Diabetes Association Montana Family Retreat February 20 - 22, 2015 Fairmont, MT 

Family Retreat is an event designed for all people living with type 1 diabetes. Education and activities are built specifically for families with children or teenagers with type 1 diabetes. There will be separate breakout sessions for parents, teenagers, and children.

Registration fees include all meals, activities, and hotel room for Friday evening through Sunday morning.  Families or groups of 6 or more will be charged additional fees for a second room. ($180 Adults, 18 and over, $60 Children, 4-17 years old, Children 3 years and younger are free - financial assistance is available.)

62nd Annual Advanced Postgraduate Course (ADA) February 27 - March 1, 2020 -  New York City, NY

A medical conference much like other scientific sessions, leading diabetes experts will give presentations on the latest in diabetes research and care, with small networking sessions thrown in for good measure. Targeted primarily for physicians, physician assistants, nurses, nurse practitioners, dietitians, pharmacists, psychologists, certified diabetes educators, and other health care professionals who care for patients with diabetes and who manage the complications related to this disease.

March

15TH Annual Rachmiel Levine Diabetes & Obesity Symposium March 1 - 4, 2015 - San Diego, CA

Made possible by the Beckman Research Institute of City of Hope, held in association with the Endocrine Society annual meeting and T1D Exchange. This is the meeting that I wish I could attend, because it covers some amazing topics: new biomarkers and drug targets, epigenetics (A debate on virus or “not a virus”) talks about the DCCT, inflammation, live debates, beta-cell function, islet cell reprogramming, and much more. (If anyone is going, please get in contact with me at theperfectd [at] gmail.com because I want to pick your brain!)

2015 Type One Nation Research Summit March 7, 2020 - Bethesda, MD

“We are thrilled to provide this unique opportunity for education and dialogue with leading experts and researchers in the type 1 diabetes (T1D) field on Saturday, March 7, 2020 at no cost to the attendees. In addition to the main program, we offer an exhibit hall full of all the latest and greatest in T1D education, resources and technology, as well as a Youth Program and Teen Track with age-appropriate guest speakers and activities. In 2014, the TypeOneNation Research Summit attracted over 800 individuals from the Mid-Atlantic region and we are looking forward to another great year!New this year — “Taking T1D to School” session.Admission is FREE with suggested donation. Buffet lunch is provided. Registration is REQUIRED and opens here on January 7th.”

ENDO 2015 (Endocrine Society) March 5 - 8, 2015 - San Diego, CA

Remember that endocrinology is not just about diabetes; it’s about the entire endocrine system. While the annual conference does have diabetes sessions, it’s not the primary focus.

TYOCD (Taking Control of Your Diabetes) March 7, 2020 - Santa Clara, CA 

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate!

The Diabetes UnConference March 13 - 15, 2015 - Las Vegas, NV

The first peer-to-peer idea exchange and support conference for all adults with Type 1 and Type 2 diabetes. Unlike other conferences geared to patients, this conference has no keynotes or research/expert presentations; just discussions facilitated by those with diabetes about topics that may be difficult to have with people who don’t have diabetes!

American Diabetes Association (ADA) Expo March 14, 2015 - New York, NY 

The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)

Bay Area Diabetes Summit March 14th, 2015 - Palo Alto, CA

The Bay Area Diabetes Summit is a collaborative effort of medical providers, community organizations, and medical institutions throughout the Bay Area. Dr. Bruce Buckingham of Stanford University and Dr. Ed Damiano of Boston University, developer of the Bionic Pancreas, will be the keynote speakers at the Summit.

The Summit is open to all adults with T1D and their spouses, friends, and significant others, parents, caregivers, and family members of children with T1D. Children with T1D and their siblings can register for a Kids Camp offered by DYF counselors and staff.

Type One Nation Summit (Southwest Ohio) March 15, 2020 - Cincinnati, OH

Featuring several breakout sessions and two nationally-known keynote speakers, this event is expected to attract 500-700 attendees.

TYOCD (Taking Control of Your Diabetes) March 28, 2020 - Austin, TX

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

April

American Diabetes Association (ADA) Expo April 18, 2015 - Chicago, IL

The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)

Diabetes Sisters Annual Conference  April 24 - 26, 2015 Raleigh, NC

If you are looking for a conference that focuses on being a woman with diabetes, then look no further. Both Type 1 and Type 2s are welcomed with open arms and significant others are offered opportunities to talk (privately and separately) while you attend the conference. This is an opportunity to learn from other women and bask in the camaraderie of friends made (who just happen to also have diabetes).

TYOCD (Taking Control of Your Diabetes) April 25, 2015 - Honolulu, HI

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

GTC Diabetes Summit 2015 April 27-29, 2015 - Boston, MA

Got $2095? Then this conference is for you.

According to the website, that $2095 will get you research, partnership opportunities and network with academia, venture capital, government, small/medium size biotech, big pharma and healthcare organizations. The summit includes the Diabetes Drug Discovery and Development Conference, dealing with the clinical side of things. The Diabetes Partnering & Deal-Making Conference dives into opportunities for partnerships, funding, licensing, and the financial bits of it all.

(Now, that all being said… If you look at the speakers, I wish I had the $2095 to attend. Some of them are the top researchers in the diabetes community.)

May

Carb DM’s 3nd Annual Mother-Daughter Weekend May 1-3, 2015 - Dublin, CA

This amazing event is for preteen/teen girls with T1D and their moms. This weekend focuses on T1D from a female perspective and addresses the female cycle from puberty to pregnancy and how it affects and is affected by T1D. Mother daughter communication, healthy body image, talking with peers and significant others about T1D, and more will be discussed.

AACE 24th Annual Scientific and Clinical Congress (American Association of Clinical Endocrinologists) May 13 -17, 2015 Nashville, TN

TYOCD (Taking Control of Your Diabetes) May 16, 2015-  Kansas City, KS

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

30th Annual Clinical Conference on Diabetes (ADA) May 21 - 24, 2015,  Orlando, FL

While not patient-centric, attendees will hear “cutting-edge research translated into clinical practice”. The 30th Annual Clinical Conference is designed specifically for primary care and diabetes specialty physicians, doctor of osteopathy, podiatrists, pharmacists, physician assistants, nurse practitioners, nurses, psychologists and dietitians, certified diabetes educators and other health care professionals who care for patients with diabetes, at risk for diabetes, and who manage diabetes related complications.

Students With Diabetes National Conference May 22 - 24, 2015 - Tampa, FL

A conference for young adults aged 18 - 30 from all over the country who want to learn about the latest in technology, research, and more from many amazing speakers.

June

 75th Scientific Sessions (ADA) June 5-9, 2015 - Boston, MA

The “big” medical conference. While not specifically designed for the layperson with diabetes, many advocates do attend and sit in on sessions. Many study results are presented. Last year’s presentations weren’t mind-blowing, but we have a feeling that some big study results are on the horizon.

July

MasterLab (Diabetes Advocates) July 7 -8, 2015 - Orlando, FL

For anyone who is interested in learning how easy it is to raise awareness (and your voice) for diabetes advocacy, attend this program. While held in the same space as Friends for Life’s conference, it’s a separate conference. Last year’s program was amazing, and this year’s is promised to be even better!

Friends for Life July 6 - 12, 2015 Orlando, FL 

This is the de facto gold standard for any family with diabetes. It’s being held this year at Disney’s Coronado Springs Resort.

Room rates are $149 + tax. This rate is available from July 3, 2020 to July 13, 2015. You may reserve a room, buy park tickets, make Disney Dining reservations, and arrange for free Disney Transportation from the Orlando Airport to the hotel online at www.disneyurl.com/ChildrenWithDiabetes2015Conference.

2015 Practical Ways to Achieve Targets in Diabetes Care July 16, 2020 - 19, 2015 - Keystone, Colorado

While not a patient conference, worth taking a look at to see what’s being discussed. “This course is designed to help healthcare providers caring for patients with diabetes, including but not limited to, endocrinologists/diabetes specialists, internists, pediatricians, family physicians, physician assistants, medical residents, fellows, nurse practitioners, nurses, dietitians and certified diabetes educators.”

August

AADE 15 (American Association  August 5-8, 2015 - New Orleans, LA

Ernest N. Morial Convention Center. Registration will be open in March, 2015.

September

CWD Focus on Technology at the Disneyland Hotel September 18 - 20, 2015 - Anaheim, California 

51st EASD Annual Meeting September 14-18, 2015 (European Association for the Study of Diabetes) - Stockholm, Sweden

This is the European “big” medical conference, much like ADA’s Scientific Sessions.

TYOCD (Taking Control of Your Diabetes) September 26, 2015 San Diego, CA

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

October

American Diabetes Association (ADA) Expo October 10, 2015 - Minneapolis, MN

The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)

American Diabetes Association (ADA) Expo October 17, 2015 - Houston, TX

The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)

TYOCD (Taking Control of Your Diabetes) October 17, 2015 - Omaha, NE

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

Friends for Life Canada at the Marriott Gateway on the Falls October 23 - 25, 2015 - Niagara Falls, Ontario, Canada 

Registration is priced on a per person basis for everyone ages 5 and older. Early registration rates will be $50/person. “Please note that we expect the conference to sell out and do not plan on having on-site registration.” You must register separately for the conference and hotel. Registering for the hotel does not register your family for the conference itself.

Friends for Life UK 2015 October 30 - November 1, 2020 Old Windsor, Berkshire, UK

Note: You must register separately for the conference and hotel. Registering for the hotel does not register your family for the conference itself. Conference Registration will open in February 2015.

November

TYOCD (Taking Control of Your Diabetes) November 21, 2015 -  Glendale/Phoenix, AZ

TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)

World Diabetes Congress November 30 - December 4, 2020  -  Vancouver, Canada

Experts in diabetes care from around the world will exchange diabetes research and best practices. Physicians, scientists, nurses, educators and other healthcare professionals, as well as government officials, policy makers and representatives from 230 IDF Member Associations will gather to learn, discover and connect.

The WDC 2015 will coincide with the expiration of the current Millennium Development Goals and the adoption of the new Post-2015 Development Framework, a major push for expanded access to diabetes prevention, treatment and a cure.

PLEASE NOTE:

We are still waiting on dates for the Diabetes Technology Society meetings.   It is also unclear is there will be another National Conference on Mental Health Issues of Diabetes.

I did not include “invite only” conferences.

As always, there are bound to be more opportunities to meet other people with diabetes, learn about the disease, and advocate. These are just a few. As I hear of more, I’ll post them here.

All Right, Stop. Collaborate And Listen…

No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.

“To the extreme I rock a mic like a vandal…”

I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.

I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.

Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.

The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…

“…We are all in this together.” - Rebecca Killion (type 1 diabetes, 17 years)

Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.

“Dance, Go rush the speaker that booms…”

heroBy the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.

diaTribe is continuing the “diaTribe Gets Fit Giveaway” - giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!)They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…

“Anything less than the best is a felony…”

DM Summit Logo 2013I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)

This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.

This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.

“Check out the hook while my DJ revolves it…”

For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.

One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.

It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)

And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.

I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.

The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.

“Quick to the point, to the point, no faking…”

logo-2Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.

John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)

I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:

Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. - Tony

I don’t think Tony gets what I was trying to say. So, here I go… no faking…

  • We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
  • Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
  • Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.

(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)

And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:

And I may have a thing for Vanilla. 

 

This I Believe…

WDD-logo-date-EN-2048pxToday is officially “World Diabetes Day”, one day out of 365 that we are all supposed to take to the skies to spread diabetes awareness.

If you have diabetes, it’s Friday, one day out of… the rest of your life.

You’ll be inundated by social media mentions of WDD and the color blue (chosen as the patron color of awareness) will be worn by those in the know. I had planned on telling you all the events and excitement that is going for World Diabetes Day, but instead, I woke up with this in my head…

This I Believe

I believe that if your pancreas doesn’t work as it should, you are part of my community. This means my voice is yours to raise if you want to help the community as a whole. This means I will champion for you, no matter where you fall on the “pancreatic spectrum”.

I believe that all 382 million people living in this world with diabetes today deserve to live their lives without discrimination, stigmatization, or finger-pointing. Diabetes doesn’t discriminate. Neither should our community.

I believe that diabetes awareness begins with me. The more I understand about my diabetes, the more comfortable I am passing on the right knowledge to others, be it friends, strangers, or the general public.

I believe that I have a duty to educate people about diabetes without prejudice or anger. We are not a house divided; some individuals with one type of diabetes has been helped by another’s research. To silo us is to separate us and the potential to learn from each other. I do not expect the general public to understand the difference between different types of diabetes, just as I do not purport to know about all of the different types of cancer. They are all devastating and have different courses of treatment, just like diabetes.

I believe that it doesn’t matter what diabetes is called. I have it. Mine might be different from yours, but in the end, our goals are the same: to live long and well with as few complications as possible.

I believe that access to technology and treatment should be available to all. Regardless of where you are, what you do, if you have insurance or live a life of privilege, we do not have a choice.

I believe the fault is in our genes, not in our choices. No one “chooses” to have diabetes and to berate or belittle someone for a perceived lifestyle discounts the science showing that most diabetes involves a genetic predisposition.

I believe that the impact of diabetes is not just on our bodies, but our psyches, wallets, and families as well. There is not enough treatment effort given on the psychological aspects of living with diabetes, not enough financial assistance given for those living with this chronic illness, and not enough support to those who love us. This needs to change.

I believe that a cure will not be the end of living with diabetes. I will always live with the vestiges of this disease, even if there is a cure found. The damage that has been done to me by the disease will live on long after a cure. There will be no way to undo what diabetes has given to my body and my mind.

I believe that we all have work to do for diabetes, using what talents we have. For some, it’s advocating, fundraising, or awareness. For others, it’s the important job of living gracefully and with dignity. We all matter in the work we do.

I believe that we cannot live a life of diabetes alone. 

I believe in the power of community. 

I believe in us.