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, September 9, 2018

Reporting on the 2018 TCOYD ONE: The Ultimate Conference & Retreat for Adults with Type 1 Diabetes

Last year, I had such a great time at the TCOYD ONE Conference, that I signed up for the 2018 event.  Kudos to the amazing people at Taking Control of Your Diabetes (TCOYD), who outdid themselves again.  Type 1 diabetes camp for adults?  Sign me up!  The conference was held at Paradise Point Resort in San Diego—a great location.  Also, many thanks to the sponsors—as a result of conversations with Tandem and Dexcom reps and the approval of my awesome endo, I have the Tandem tSlim + Dexcom G6 (and the Basal IQ, which is the predictive low glucose suspend) on the way.  I also was able to purchase an excellent travel bag for all of my diabetes supplies, courtesy of Eu Go (  TCOYD filmed all of the talks, and the 2018 talks have been posted online (the 2017 talks are also available).

The talks were incredible.  Dr. Irl Hirsch never ceases to amaze—this year, Dr. Hirsch spoke about optimal use of CGMs, and he also spoke about how to use your CGM to do basal rate testing.  I was blown away by the talk by Dr. Anne Peters, who I have long admired and who advocates for those with adult-onset Type 1 diabetes.  Dr. Peters revealed that she had autoantibody tests performed on herself, she is positive for four of the five autoantibodies (but is not yet symptomatic), and she is the oldest person enrolled in Type 1 Diabetes TrialNet.  Dr. Peters spoke about the use of Type 2 drugs in Type 1, and personalized it by talking about the drugs that she is using to try to slow the progression of Type 1 in herself (liquid metformin, for example).  There was a panel discussion on Type 1 TrialNet.  The amazing Kerry Sparling led a group discussion about the good, the bad, and the ugly of Type 1 diabetes.  IMO, negative emotions/negative outlook are a huge factor in how well we can care for ourselves—and yes it is up to us as individuals, with the support of our diabetes team and loved ones, to do the 24/7/365 drudgery.  Dr. Bruce Buckingham and Dr. Rayhan Lal, both from Stanford, spoke about automated insulin delivery systems (closed loop systems using a CGM + insulin pump + algorithm).  Dr. Lal talked about Looping (DIY closed loop systems and #wearenotwaiting); he has put hundreds of patients on DIY systems.

Dr. Jeremy Pettus gave a great talk about the rapid acting insulins Fiasp and Affreza—Affreza is an inhalable insulin that is significantly faster acting than injectable insulins.  Fiasp is only slightly faster than Novolog and Humalog.

Following last year’s conference, I reached out to Dr. Irl Hirsch, and I was able to interview him for my blog on the topic of misdiagnosis.  This year, I ran into him and was able to thank him—he is the most gracious, most brilliant man.

Tips and tricks:

·       Wash your hands before performing a blood glucose test—even milk on your hands will skew the result!  Especially if you are using any kind of closed loop system (insulin pump + algorithm + continuous glucose monitor, wash your hands to be sure that you get a good result.
·       Pre-bolus before meals.  Humalog/Novolog are not that fast acting—it is good to pre-bolus by 15 or 20 minutes—figure out what works for your body.
·       Dr. Edelman was campaigning to get more widespread use of CGMs.  CGMs are a game changer, and really improve the lives of people with Type 1 diabetes!

I had a great time hanging with my tribe, the amazing women of the Type 1 women’s group that I attend in Oakland, California (thank you Amber, Hanneke, and Sarah!).  When I was walking to the start of the morning activity of power walking, I met Amber V, who was diagnosed with Type 1 in pregnancy (yes, autoimmune gestational diabetes is a real thing, but overlooked).  In a Facebook group, I had provided Amber V with my blog on autoimmune gestational diabetes—it was the first time she had heard of it!  Amber V and I shared a big hug.

Frequently amongst people with Type 1 you hear, “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 (Hirsch, Buckingham, Edelman, Peters, etc.) 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.

No comments:

Post a Comment