Everything I Need to Know I Learned at TCOYD

Last year, I attended the first Northern California iteration of the fabulous Taking Control of Your Diabetes (TCOYD) conference series.  I was blown away by: 1) how informative a one-day event can be, 2) how fun and motivating it was {even when sacrificing an entire precious Saturday}, and 3) how many hundreds — no thousands! — of other people with diabetes {and all the same questions and frustrations} live right in my area. Oh-so-definitely worth attending, whether you’re a Type 1 or 2, young or old, in good control or not.

Did I mention that TCOYD is the brainchild of Dr. Steven Edelman, Professor of Endocrinology andImgp2906_1 Metabolism at the University of California, San Diego?  Which wouldn’t be all that interesting except that he’s a high-energy Type 1 diabetic himself — and generally hilarious and wacky guy (meant as a term of endearment, of course.)

Anyway, this year I attended the 2nd annual Santa Clara event in another capacity.  I actually came within an inch or two of presenting, but since the break-out rooms were in short order, I ended up manning my own DiabetesMine.com booth, meeting and greeting and talking to folks from all walks of life about using the Internet as a diabetes tool, so to speak.  Both exhilerating and exhausting.

What I learned this year was that: 1) there’s an incredible need for Spanish-language materials on diabetes self-care, and 2) all the players — health plans, providers, pharma and device companies and so on — are grappling with how to convey clear and accurate information to the patients who need it most.  Which made me feel very proud indeed of my hard work at DiabetesMine.com, aimin’ to fill that gap :)

On that note, here are some new developments you won’t want to miss:

Diatribe_logo diaTribe Patient Newsletter — diabetes industry consultant Kelly Close of CloseConcerns, referenced here often, is launching a new patient-oriented newsletter called diaTribe.  You’ll get the inside scoop on new product and research developments from the ultimate insiders. Neat! The cost is $29 a year for six issues, delivered electronically.  To subscribe, sign up HERE.

James Hirsch Cheats Destiny — the brother of Dr. Irl Hirsch of diabetes standard deviation research fame has a new book coming out next month, called “Cheating Destiny: Living with Diabetes, America’s Biggest Epidemic.” Both brothers have Type 1 diabetes, and James’ young son Garrett was recently diagnosed with the disease as well.  James is a former NY Times and WSJ reporter, and also a regular contributor to dLife.com and CloseConcerns, including the new diaTribe newsletter introduced above.  Impressive.  Another PWD I would love to meet.

Flexible Symlin Therapy — An Amylin representative at the expo explained that they’re learning a lot with real-world application of the drug. Instead of sticking to the original “gold standard” of up to 20 units (120 mcg) per day, delivered after each meal, the company is finding that doctors and their patients often prefer just a once-a-day treatment. In other words, if you tend to peak after breakfast no matter what you do (like me), you could just add a Symlin shot every day post-breakfast. No pressure to inject at every meal.  Sounded much more appealing to me this way, presumably with less nausea.

Diabetic Diner Guy — Finally, I met a new member of the OC, who blogs about food choices and dining out in the San Francisco Bay Area with diabetes at Diabetic Diner.  I told him I’ve all but given up announcing every new D-blog as it appears on the scene.  But meeting some of you off-line is always a treat!  So go check him out. Tell him Amy sent you.

Advertisement

2 Responses

  1. Scott K. Johnson
    Scott K. Johnson October 9, 2006 at 9:50 am | | Reply

    I really have LOVED the two TCOYD conferences that were here in the Minneapolis area. You are right, amazing how so much can be crammed into a single day event.

    I love Dr. Edelman and also got a lot out of the book that is given along with the entry fee.

  2. Sarah
    Sarah October 9, 2006 at 11:02 am | | Reply

    Amy,
    I have been on symlin for close to 11 months. I started with 4 symlin shots today, and over time I’ve chosen to reduce to only one per day, with breakfast. Initially with symlin my a1c went from 6.9 to 6.2, but then later as frequent severe lows rebounded a few hours later into nasty highs, I decided that symlin just wasn’t working for dinner, evening, and sometimes even lunch. Symlin use works much better for me this way, I don’t have the nasty lows I used to, and there is a lot less guess work.

Leave a Reply