When you're diagnosed with type 1 as a kid in Western New York, the first step is pretty much the same as anywhere else that you may get that not-so-welcome news: You see an endocrinologist.
But when you see an endo at the Women's and Children's Hospital of Buffalo, you're also handed a special flyer for a local support group known as D-Link. Yes, it's a doctor-recommended support setting (!) for patients 12-20 years old, meant to remind the newly-diagnosed (or not so new) that they are not alone. The group discussions are all about those pressing issues and concerns that typically come up in teen and young adult years, when diabetes is generally along for a wild ride.
When you attend one of those D-Link meetings, you'll meet one of the main guys in charge these days -- 22-year-old Jim Schuler, current group facilitator with a decade of his own type 1 experience under his belt. Jim didn't start the group, but he's been going to meetings since he was in high school and has grown from very active member to educator, and now session-leader. He's also played a large role in increasing the group's size through his recent community and media outreach. And all that's why we thought he'd be a perfect fit for our Amazing Advocate series.
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Our intern Cait Patterson caught up with Jim recently, which was a challenge in itself since he's now starting his first year of medical school! They talked about what makes D-Link unique, what he sees happening for the group going forward, and Jim's personal plans for the future.
DM) So, let's start with your diagnosis story...
JS) I was diagnosed ten years ago at the age of 12. It will officially be ten years on August 2. I had a lot of the classic symptoms, peeing and drinking a lot, and a little bit of weight loss. I was pretty skinny to begin with, but I lost like 10 pounds that summer. But definitely peeing and drinking were the most noticeable symptoms. I remember drinking gallons and gallons of milk — every day it seemed like. It was the summer, so I just chalked it up to being dehydrated, but my mother, as smart as she is, took me to the doctor because she was concerned and buh-da-bing: diabetes!
What else do you remember about diagnosis?
Two days after my diagnosis, we were leaving for vacation on August 4. So I was treated in-patient for about one and a half days and then we got on a plane to go backpacking in Montana for two and a half weeks. Right before we left, they were running back and forth from the hospital and going back and trying to pack, trying to keep things as normal-ish as possible. And then my brother's birthday is August 3, so they had to run back to celebrate his birthday and get him a cake and then they would run back to the hospital to see me. So it was pretty stressful for my parents, but I had a great time. I was just in education classes all day.
And of course, for my mom and dad, it was their first time flying, so they're trying to get on the plane with bags and bags of needles and prescriptions they've never seen or used before. I had a great time, but they were stressed. For me, it was a chaotic yet fun time, I think.
When did you first connect with D-Link?
I started going in about 9th grade, so let's see... about six or seven years now. I started as a member going to meetings, and I was super interested in not only interacting with the medical students and hearing what they had to say, but also educating the medical students, because they didn't know a whole lot about diabetes. And then once I got to college and started working in diabetes camp, I kind of turned from member to sort of facilitator and leading discussions, not in an official role but the medical students who were running the meetings at that time kind of looked to me to guide the discussions on issues that I knew people would deal with in the future. And now, a few years after that started, I've moved into the role of planning meetings, topics to talk about, planning dates, and also administrative duties.
What are the origins of D-Link?
It's run by the University of Buffalo, at the only pediatric endocrinology center at the Women's and Children's Hospital. It was started by several medical students whose siblings had type 1, and who saw them struggling and wanted to give back to the community that they were in at that moment. They would sent out a yearly flyer with all the topics and meeting dates, etc. I was interested and attended my first meeting, and the rest is history, as they would say.
And what's involved in a typical D-Link group session?
We have a set topic ahead of time, and I try and stay on topic and cover as much ground as possible, but after a while it is easy to drift. Of course, if we have a pre-set topic, but no one wishes to discuss it, or is having any trouble, we will discuss the more pertinent issues on the members' minds. All diabetes issues relate to: sports/athletics, school, doctors, relationships, friends, parents, driving, and if someone asks, drinking -- I'd rather they ask me and know about it than put themselves in a dangerous situation.
Sometimes the term "support group" isn't popular.... does that matter?
Strictly speaking, I would call us a "support group" although there's nothing wrong with that. But those words can sometimes have a negative connotation, so if I feel it is scaring people away, I refrain from using the term.
Do you know if D-Link's "group talk" model is unique or are there existing similar programs?
Similar groups likely exist somewhere, but I've never been contacted by other facilitators, or attempted to reach out... though I probably should. Diabetes Forecast is putting out a story about support groups in an upcoming issue (in August), and I spoke recently with them about that.
Is D-Link limited to teens and young adults, or does it also serve adults and parents in the Diabetes Community?
In addition to D-Link here in Buffalo, we also have PODS (parents of diabetics) which is for parents of newly diagnosed type 1s diagnosed at any age. I try to work with that group and I encourage parents of kids coming to our group to go to that group. There's also an adult type 1 group that I also attend myself, and I encourage kids that have sort of "graduated" from our group to go to that group. I like that we have a continuum of support throughout the stages. Both groups are separate from us, and their meetups are organized by local PWDs. I encourage interaction among all three groups, and actively try to give folks all the information from which they can benefit.
You sort of became the PR powerhouse for D-Link, correct?
In the past year, I said to my fellow facilitators and medical students that a lot of people show up at the clinic and say: "Is there anything out there where I can find others to connect with?" They don't know we exist. And I always found it so frustrating that the word wasn't getting out enough.
So in the past year, I've really worked hard at getting our story out, and contacting local media and newspapers and radio stations and things of that nature. A couple of months ago, we had our first article published, and since that's happened I've had to answer a lot more emails regarding people coming into our group. Kids and parents alike are more interested and sending us queries. So the media outreach has really helped and I'm very happy about that.
What are some next steps or future goals? How would you like to see D-Link grow in the future?
One of the best things we've ever done is move the meeting location to a more central spot where more kids were coming from. We've also instituted non-diabetes social event once a month. So if kids don't want to come to a meeting to talk about diabetes, we encourage them to come to our monthly fun activates such as laser tag, or movies, or snow tubing or rock climbing; we're attracting them that way.
Meanwhile, I am happy to report that I will be in Buffalo for at least the next seven to eight years, so the group is at least guaranteed to have my support for that duration. I just graduated college (undergrad) a couple of weeks ago and I've been accepted by the MD/PhD program at the University of Buffalo, so I'm looking to grow my role not only in the medical field but also the diabetes community in general.
What impact have you seen on your own health from being part of this group?
It's certainly very difficult to go to a meeting and tell kids you should do 'blah' because it's good for you in the long run or you should do this because ... whatever reason. It's very hard for me to say that if I'm not doing it myself. So I definitely see it as a positive.
Congrats on getting accepted into Med School! What are you planning to specialize in?
I can tell you what kind of doctor I want to be, but that will change... and on day 3 it will change again, and on day 4 it will change again. That said, coming from my background, obviously pediatric endocrinology is near and dear to my heart and I enjoy working with kids. I love volunteering at camps and I love working with D-link -- but as I've heard from other diabetes doctors, you face the specter of 'diabetes is not only your life, but it also is everyone else's life you have to worry about.' So I'm kind of 50/50 on that. I also may go more into my research interests, which are genetics, genomics, cancer, or oncology perhaps.
Finally, how will your becoming a med student change things for D-Link?
Now it will be even easier for me to go to the clinic and directly interact with the doctors there and more clearly tell them what I would like from them in terms of support. I guess having more credibility to my name... that's what I'm most looking forward to in the upcoming years. It will also place me in rotations where I'm working with patients, so I think being directly in the exam room handing people flyers will only be a boost to our membership.
Thanks for your great efforts connecting your community, Jim! We can't wait to see where you end up, along with all the great future generations of PWDs you're helping to connect and empower.