The Problem

It is time that the full scope of Type 1 diabetes is acknowledged, which includes millions of adults who are too frequently misdiagnosed as having Type 2 diabetes, an altogether different disease.

Sunday, June 25, 2017

Reporting on ONE: The Ultimate Conference & Retreat for Adults with Type 1 Diabetes

The amazing folks at Taking Control of Your Diabetes (TCOYD) have completely outdone themselves.  Now, I was diagnosed with Type 1 diabetes as an adult, so I never attended famous-amongst-children Diabetes Camps.  Well, now I have attended a Type 1 retreat for adults (Diabetes Camp for adults), and I can say with certainty that it is fun, I am so much more knowledgeable, and I am inspired and motivated.  Diabetes Camp allows people to learn to care for themselves better, have fun, and realize they are not alone.  Diabetes camp for adults does all of those things, plus has cocktails and luaus!

The talks were incredible.  My favorite was “The Artificial Pancreas:  It’s Closer than You Think” with speaker/researcher legends Bruce Buckingham (Stanford endo), Ed Damiano (the brains behind the insulin/glucagon artificial pancreas iLet by BetaBionics), Jeffrey Brewer (Bigfoot Biomedical), Jacob Leach (Dexcom), and John Sheridan (Tandem).  The first automated insulin delivery device, the Medtronic 670G, is newly on the market, and I am hopeful that very soon we will have more options.

I was surprised by the talk that I attended by Tricia Santos, “Treatments for Type 1 Other than Insulin.”  Until now, I had simply dismissed drugs for Type 2 being used on Type 1s, but studies have shown that both the GLP-1 drugs and the SGLT2 Inhibitors greatly increase “time in range” for Type 1s.  Of course, there are potential side effects, but I will follow this more closely.

Stephen Ponder, of Sugar Surfing fame, gave an abbreviated talk on his methods of better control.  His book, of course entitled Sugar Surfing, is a must read.  Irl Hirsch, preeminent diabetes researcher and person with Type 1, talked about the limitations of the A1c test, and how good control is so much more than A1c.

Kerri Sparling, author of the blog SixUntilMe and author of the book Balancing Diabetes, gave several excellent talks addressing the emotional burden of diabetes.  And Kerri is hilarious, too!  My personal belief is that the emotional aspect, from the grief of diagnosis to the “staying motivated” after decades of life with Type 1, is the most challenging.

There was even a talk on “Alcohol and Diabetes:  Do They Mix?” by Jeremy Pettus.  Who knew that a speaker would put up a slide about “foofy drinks”?!  And BTW, a foofy drink is a pina colada, weighing in at ~60 grams of carbohydrates for one drink.  Jeremy reaffirmed my drink of choice, dry wines, which are low in carbs and have a negligible effect on blood glucose.

I connected up with some women from the Type 1 women’s group that I attend in Oakland/Berkeley.  I am so grateful for that group and having those connections.  I was blown away by the sheer numbers of people—over 500 people registered.  Now, some were Type 3s (spouses, other support people), but mostly this was a huge group of people with Type 1 diabetes.  Very inspiring.  The longest diagnosed person that I met was 66 years with Type 1, the shortest was less than 2 years.  Quite a span.

Other tidbits:
  • Adam Brown of DiaTribe has a new book out, Bright Spots and Landmines.  If you want the best, most practical tips on caring for yourself and your Type 1 diabetes, this highly readable book is it.  Also, I really recommend subscribing to the DiaTribe newsletter, which keeps up with the latest and greatest.
  • Chris Angell, diagnosed with Type 1 diabetes at age 30 (initially misdiagnosed as Type 2), created GlucoLift glucose tablets (www.buyglucolift.com), to provide an alternative to awful-tasting glucose tabs.  GlucoLifts were offered at the ONE “High” station, and I can tell you I will be ordering them!
  • Mark Atkinson of nPod is doing amazing investigations on the pancreases of Type 1 cadavers.  NPod is the Network for Pancreatic Organ Donors with Diabetes.  Mark is smashing myths and doing great research.

To any person that says, “There is too much money to be made on treating those of us with Type 1 diabetes, so there will be no cure,” I would challenge you to listen to these extraordinary men and women who are doing so much to improve our lives.  Many thanks to Steve Edelman, founder of TCOYD, and his team for putting on this extraordinary conference.


Out of this, I have made a list of goals for myself, and three of us plan to get together to look at our graphs, analyze information, and help improve our control (for me, time in range) and our lives.

2 comments:

  1. This was an awesome retreat. So much fantastic information and very inspirational to spend time with so many other type 1's.

    ReplyDelete




  2. Thanks for the information. Hope devotes will be careful after reading this post.Regards


    Johannesburg and Umhlanga

    ReplyDelete