We R the Cure

Seeking Cures and Cheating Destiny


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Is anyone using Joslin HypoMap App? Are self-management technologies future of diabetes care?

An open question to my peers in the #DOC : I’m wondering if anyone is using the Joslin HypoMap software App?  Is any of the cost covered by healthcare insurance? What are the early results from users?

diagram of the HypoMap App developed by Glooko and Joslin Diabetes Center.

Diagram of the HypoMap App developed by Glooko and Joslin Diabetes Center.

 

The app is included in this must read update about translational technologies from the Joslin Diabetes Center :

JITT doesn’t plan to introduce any new technology to the market themselves. “We are not technology,” says Harry Mitchell, executive director of JITT. “We are the know-how. We are the clinical solutions that strive to make technology better to improve the lives of people with diabetes.”  A nationwide shortage of endocrinologists, diabetes nurse educators, and adult diabetes care centers has burdened the healthcare system and impacted timely patient care. Howard Wolpert, M.D., director of JITT, believes the future of medicine, particularly diabetes care, must begin with self-management technologies.

DiaTribe Report of HypoMap.

http://blog.joslin.org/2014/09/molding-the-future-of-diabetes-technology-with-the-joslin-institute-for-technology-translation/#more-5365


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D-Blogweek Post 2: He’s a poet and don’t know it — For Whom the Bell Tolls

Yesterday was Poetry Day for Diabetes Blog Week. So, I’m playing catchup already.

Click on the #Dblogweek buttoin

Diabetes Blog Week — Click to find out more details.

Instead of  trying to be a poet, I think it’s wiser to reprint something that fits a certain viewpoint — how Type 1s are living with a chronic disease that ticks, ticks, ticks in the back of our mind. Healthy looking on the outside, not so healthy on the inside.  Seeking Cures and Cheating our Destiny.  And raging against the machine.

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

These famous words by John Donne were not originally written as a poem – the passage is taken from the 1624 Meditation 17, from Devotions Upon Emergent Occasions and is prose. The words of the original passage are as follows:

John Donne
Meditation 17
Devotions upon Emergent Occasions

“No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee….”


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Mathematics, Mary Tyler Moore, and Standard Deviation, Oh My! We’re Gonna Make It After All

The headline, I hope, made you stop and wonder. Math. Mary Tyler Moore. Standard Deviation? Three random sounding topics that actually have one thing in common: Living with Type 1 Diabetes, of course.  The balancing act is the perfect excuse to republish some of Mary’s best quotes — about her battle with the disease — on our complicated journey toward better health and cheating our destiny.

We R the Cure blog and photo of Mary Tyler Moore at JDRF Childrens Congress 2009

Mary Tyler Moore greets President Obama during the 2009 JDRF Children’s Congress event in Washington. DC. She is flanked by her husband, Dr. Robert Levine, and boxer Sugar Ray Leonard.

“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one,” Mary has told members of the United States Congress during JDRF’s Children’s Congress. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”

I also know that a photo — or in this case a You Tube video from @Blogdiabetes friend Tony Rose — is also worth a 1,000 amazingly insightful words from me, the CEO, Editor-In-Chief of “We R the Cure.com.” Right? As I learned in Journalism 101, it’s time to get to the “So What?” or “hook your audience now” or lose them forever sentence.

After living and dying in three-quarter time with Type 1 diabetes for 15+  years, I’m actually beginning to figure out how much effort, dedication, cool technology and sheer luck it takes to “control” my blood glucose. The answer: It takes every waking second of every day, and that still does not guarantee an A1C less than 7 or eliminate the rollercoaster blood glucose ride. I love coasters, but the more you learn about this crazy,  chronic disease, and the harder you work to control it using insulin pumps, meters, CGMs and Apps — It still winds up controlling you most days.

For the past 4 months, I’ve been religiously wearing my new DexCom 4 Platinum CGM — which I love. And, as the images here will show — my standard deviation has dropped from 68 to 58 and is approaching the 50 reading which, according to Laura Adams, Certified Diabetes Educator with DexCom, is the number persons with type 1 diabetes (PWD) should aim for when seeking to control their glucose. In fact, Laura says a standard deviation reading between 50 and 40 on my DexCom ” Studio” reporting App should be the target. Fortunately, calculating the SD number is done automatically by the App based on my CGM numbers. They’ve taken the math out of my hands.

In Part 2 of this blog story, we’re going to dive deeper into the math and determine if standard deviation, A1C or something called “Glycemic Variability” is the true “gold standard” of BG control?

For now, I’ll leave you with these positive trendlines from DexCom App, which does not sync up with my insulin pump App (Diasend) — but that’s another story. Let’s call this my starting point as I aim for better control with the goal of reducing the possibility of serious health complications such as blindness, heart disease, stroke and amputations. I am in charge of my own cure, and getting better control of my numbers is the key.

The good news: My numbers are getting better thanks to technology, effort and some luck. The sobering news: this is a 24/7 battle and there’s never ever a day off.  Don’t take my word for it, take it from my Type 1 best friend, MTM:

“Chronic disease, like a troublesome relative, is something you can learn to manage but never quite escape,” Mary explains on JDRF.org’s website. “And while each and every person who has type 1 [diabetes] prays for a cure, and would give anything to stop thinking about it for just a year, a month, a week, a day even, the ironic truth is that only when you own it — accept it, embrace it, make it your own — do you start to be free of many of its emotional and physical burdens.”

We’re gonna make it after all. We R the Cure.


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HealthLine.Com Ranks Top 17 Best Blogs: Passionate Type 1’s Educate And Chronicle Their Struggles, Successes

Diabetes is a condition that affects millions of people around the world. Several eloquent and compassionate people who face diabetes have chosen to write about their experiences in blog form, chronicling both their struggles and their successes. In addition to being compelling reading, these bloggers’ stories bring together the online community of those whose lives are affected by diabetes.

After poring over many, many diabetes blogs, looking for the best of the bunch, we have collected seventeen of the best diabetes blogs for you to read. We trust that you will find these bloggers’ writings and experiences to be sources of both helpful information and hope. The Diabetes Online Community #DOC is a great source of support for me. Together, We R the Cure!

Published March 29, 2012
Written by Leah Snyder