Kids celebrating themselves
Irl Hirsch, MD, Endocrinology
My own designer T-shirt
‘Friends for Life’ is Children with Diabetes’ (CWD) national conference and it is aptly named. If you are six or eleven or sixteen and have diabetes you will probably come away after three days of sports, fun activities and spending time with the likes of basketball marvel, Adam Morrison, with a friend or two or three for life. As founder Jeff Hitchcock says, “Forever is how long our kids feel they’ve known each other, even if they’ve just met. Forever is how long they will remain friends, sharing something that is so deep and so emotional that their other friends often will never understand.”
If you are the parent of a child with diabetes, you will come away with an armful of medical and research updates, a head full of innovative family therapy strategies and a wallet full of contact information for your new friends. You will meet parents from near and far whose lives are remarkably like yours.
This was CWD’s 25th conference. Laura Billetdeaux, who runs the conference with Jeff, writes eloquently in the conference’s pamphlet. Nine years ago when her 8 year old son was diagnosed with diabetes she left the hospital with a binder full of information and CWD’s card in her pocket. Her first night home the binder sat on the table as she took the card out, turned on her computer and became a CWD mom. Today she is a driving force behind ‘Friends for Life.’ I myself witnessed the email flurry a few months prior to the conference as my inbox was flooded by parent’s emails excited beyond belief to be coming together.
This year more than 2,000 participants from ten countries attended. My husband proudly represented the Netherlands, and there were many from Canada, the United Arab Emirates, Scandinavia and Australia. Surgeon General Ken Moritsugu, M.D. kicked off the ceremonies and top research faculty from Diabetes Research Institute of Florida and Stanford, top therapists including current American Diabetes Association President, Richard Rubin, and a number of celebrated faces like former Miss America, Nicole Johnson Baker and American Idol star, Kevin Covais, heated things up. While I thought it a crazy idea to hold a conference in Orlando in July, obviously I am not a mom. The conference ended on Friday leaving the weekend for families to head over to Disney World.
In addition to three days of speakers, the Exhibition Hall hosted nearly every major pharmaceutical and device company in diabetes. I managed to pick up three new meters, a new battery operated lancing device from Pelikan Sunthat I’m now trying out, interesting information about wave sense technology and an application for theiport. It allows you to perform MDI (multiple daily injections) through a little plastic device dramatically reducing the number of needles that actually pierce your skin. I got a free Extend bar, which I highly endorse. A few bites before sleep always keeps me from crashing overnight. And, there were baskets full of every flavor Glucotab from Tropical punch to Mango right at the registration desk. How cool is that? I got the opportunity to be tested on my forearm for the first time but it is not for me. Rubbing my arm to get the blood to the surface and subsequently pressing around the needle prick made me feel a little faint. However, for many children it is a welcome, less painful method than finger pricks.
What I was at the conference is something I rarely am in mixed company – the majority. There was blood sugar testing going on everywhere, pumped up kids pumping, buffet tables littered with carb count cards and everyone intimately knew the frustrations of, and struggles with, high and low blood sugars. Parents who worry non-stop for their children’s safety, health and future shared their agony, learning, failures and successes.
One of my favorite workshops was given by Joe Solowiejczyk, RN, MSW and in my humble opinion, unparalleled family therapist. Joe changed the surface of the ground parents walk on when he said, “When your child doesn’t test or record his blood sugar numbers, since you will have already agreed this is their responsibility, treat it like bad behavior – and administer consequences. That’s how they’ll learn to be responsible.” How contrarian to the overwhelming desire to indulge your child. However, “The more you rush in to do,” Joe warned, “the less they will do.” I also loved Dr. Rubin’s presentation on ‘Diabetes Overwhelmus.’ Who of us has not been there?
Here are a few other resources I can point you to that may be of interest.Diabetestrialnet.org seeks candidates for trials that they are conducting to help prevent and cure type 1 diabetes. Insulin for Life is dedicated to providing insulin to children in countries where they cannot afford it. In these countries most children die within two years of being diagnosed. And maybe you want, as I have procured, that lovely little blue pin from Unite for Diabetes. I wore it the last night of the conference when everyone was invited to have dessert with the faculty. I should also mention that everyone on the faculty I asked for an interview readily agreed and gave me their email address.
As I go through my notes over the next few days I may share more highlights but here’s the bottom line. It’s inspiring to see this forum and the families who come. On the second day of the conference on the lunch line I met the mom behind me. When I turned around to hand her the serving implement, she saw the design on my T-shirt (above), Be a diabetes warrior, not a worrier. She immediately choked up and said, “Thank you, I needed to hear that today.” Later she came over to my table in the dining hall to tell me that her son had had a series of low blood sugars through the night and she was just wasted, frustrated and sad. Yes, I thought, that’s diabetes. I later heard the author of Cheating Destiny, James Hirsch, put it so succinctly, “Diabetes is numbers going up and down.”
The very first day of the conference I learned something that surprised all of us in the session. The biggest predictor of a child’s A1c one year after diagnosis is how supported his or her mom feels, as a wife, a mother, a woman, a person. I like to think the sentiment on my shirt helped one mother in some small way. On a larger scale, if you know someone who has a child with diabetes tell them about the ‘Friends for Life’ conference and CWD. They will find a world of support, understanding, knowledge and comrades who may well last a lifetime.