The Daughter Who Inspired a Diabetes Game-Changer
A diabetes diagnosis three decades ago put it all in motion, setting the stage for one of the first online diabetes forums, back when the Internet was still in its infancy. Eventually, that would evolve into an annual conference and enormous community of diabetes families that's expanded globally and touches countless lives.
That all wasn't immediate, of course. Because after all, Marissa Hitchcock Town was only 24 months old back in September 1989 when she was first diagnosed. But her diagnosis would be the inspiration.
Yes, we're talking about the Children With Diabetes organization that's made an irreplaceable impact in our community over the years. Marissa's parents, Jeff and Brenda Hitchcock in Ohio, started CWD back in 1995, and nurtured its incredible growth while Marissa grew up. She's now married and a Certified Diabetes Educator working in Artificial Pancreas research with the esteemed Dr. Bruce Buckingham at Stanford University. She has a beautiful family of her own with her husband Adam, their 5-year-old son Connor and 2-year-old daughter Evelyn.
We chatted with Marissa recently about her diabetes story, growing up alongside the CWD organization, and how all of that played a part in her taking the career steps she has.
An Interview with T1D Marissa Town
DM) Can you start by sharing your diagnosis story with us, Marissa?
MT) I’m very fortunate that I don’t remember a whole lot about my diagnosis because I was so young. I know that my parents had an interesting experience that really put everything into perspective. In the ER on the other side of the curtain from me, there was a kid with cystic fibrosis. It’s still a very difficult disease to live with today, but this was back in 1989. So from the very beginning, my parents had this cool perspective: “This sucks and it’s going to be hard, but it’s not the worse thing that could happen to us and we’ll figure it out.” That really set the stage for everything that happened in my life.
What do you remember from those early days, being so young?
I’m told they had to hold me down a lot to give me shots, force me to eat a lot… I have two young kids myself and now I know it can be a struggle to just put a sock on them, not to mention give them a shot. And things were much more regimented then. It was only NPH and Regular (insulin) back then, so you take these shots twice a day and then eat pretty regimented. I still kind of eat that way – breakfast, snack, lunch, snack, dinner.
You went to diabetes camp as a kid?
Yes, I did. One of the first was family camp, where I gave myself my first shot at age 4. And I’m sure as a toddler, I was probably just running around playing with friends and didn’t realize there was any diabetes side to it. When I got older, we stayed involved in camps and other things.
When did you go on a pump?
My dad has always been an early adopter, so I was 11 in about 1998 when I went on an insulin pump. The clinic in Cincinnati wasn’t ready to do that, but others were. My dad had started CWD a few years before that, so he knew that folks at The Barbara Davis Center (in Colorado) were putting kids on a pump at a younger age. He could see how freeing that experience was for kids and families, because instead of having to eat to cover your insulin, you could take your insulin for the food you’re eating. That’s a completely different way of looking at things – instead of making your life fit into diabetes, it was making diabetes fit into your life.
So I was 11, and I vividly remember my doctor trying to put a Silhouette infusion set into my stomach and seeing his hand was shaking, and thinking ‘Is he really the right person to be doing this?’ But alas, we did it. I was the first kid at camp to have a pump, and one of my counselors told me the pump was the devil. It was a really interesting experience growing up at that time and in Cincinnati, and that is one reason I think I’m at where I am today.
What were the teen years like for you?
Really interesting. I really didn’t have any burnout during those years like so many do. I was always driven to have as good control as I could. I really never had that teenage rebellion that others talk about, with diabetes. I always had the attitude: 'I have diabetes, it’s a pain in the ass, but why don’t I make lemonade out of lemons and help other people?' That’s been my drive. I think it was because of the way I was brought up, with my parents starting CWD, and my being so involved with it growing up.
What kind of memories do you have of growing alongside the Children With Diabetes empire?
My dad started CWD in 1995, when the Internet was just coming out, so it was one of the first – if not the first, diabetes websites especially for type 1. It was about helping people in the diabetes community meet each other, because I think (my parents) realized how valuable that had been for them in those early years after my diagnosis. Also a huge part of what CWD is and has become is teaching you that you need to stand up and advocate for yourself, your family, to make sure you’re getting the best diabetes care you can, and that you have rights in school and the workplace. With the online community, you can look elsewhere and see what works. CWD really encourages that. For me, it brings that intention of just reaching out to people and helping.
OK, what’s it like knowing that your dad started this website, community and conference series that's changed the Diabetes World, all because of you?
That’s a really hard question to answer. I don’t know, really. How am I supposed to feel? I really love that it’s happened and it has brought joy to so many people. It’s really nice that he loves me and has done and all that. It’s not just for me, it’s for everyone. There are FFL conferences and so many activities that touch lives everywhere, and help people just be accepting of the chaos that can be diabetes. I definitely appreciate my parents so much as an adult! But it’s a huge question, and I don’t know how to answer it with enough words to express my gratitude.
How did that influence your career direction?
It shaped it a ton. It started from CWD, in being able to influence my peers in a positive way. When I was a teenager, I’d always been driven to take care of myself. A lot of my peers weren’t in that place, and I was able to help them do a little better. That was really rewarding, and it pushed me into the career that I’m in as a CDE.
Did you always want to become a Certified Diabetes Educator?
I went into nursing and knew that I wanted to become a diabetes educator, yes. I knew that I wanted to do some hospital nursing, too, to make use of my four years of nursing school… otherwise I could’ve went right into diabetes before nursing school! LOL But it was really hard to get into diabetes in Cincinnati, honestly. I interviewed right out of college at the Children’s Hospital and I was all excited to become a diabetes educator. I’d asked them how many CGMs they use, and there were “Ums” in response.
Sure, I was an early adopter but CGMs were already being widely used elsewhere by then. So it took me a while to get my hours in to become a CDE. At one point early on, it was rare to see a younger diabetes educator; most of them were older, and aging out of the profession. The idea that young people needed to become CDEs hadn’t quite come to light and wasn’t yet a movement in the diabetes education world. As I started working, they created mentorship programs and that was awesome. There’s so much to do in diabetes; the more folks we have on the front lines, the better the outcomes will be and the more we can help.
How did you start your career?
I started out at a clinical level after nursing school and doing my RN work. Working in the clinic was fun. I didn’t think I would like working with adults as much as I did, but a lot of it was about support. It was often me saying, 'You’re doing a great job, and let’s do this one thing and you’re going to be fine.' So I was able to help people, but it wasn’t enough. They did have me doing a lot of Prior Authorizations, which I know is important but it was very mundane and I wanted to be with patients.
I knew that’s my strong suit, in establishing a relationship and helping them get to what they need. So after the clinic, I went to work at an insulin pump company where I got to engage with more people directly regularly on just type 1. Because that’s really what I know and live with, and it’s easier to empathize with. I worked at Tandem and got to train people on pumps, seeing kids and adults and meeting with providers about the pumps. I didn’t want to be salesperson; to me, I was selling patient choice – because a lot of places, the provider says 'This is the pump you’re getting because this is the pump company I know.' That’s not really how this should work. It’s about the patient getting what’s best for them. That was a lot more rewarding than I thought.
Now you're in Artificial Pancreas research with Dr. Bruce Buckingham at Stanford?
Yes, I am a research nurse there and help with a lot of the studies. We do a lot of studies with a whole bunch of different devices, so I get to see all the different devices coming out and the various perspectives from those using them. The move from a local clinic to Tandem was more broad, and now I’m doing research that has the power to help even more people. I could not say no! And the timing was perfect, because our adoption was just finalized with our daughter a couple months before this so we were free to move to the West Coast.
Coming to Stanford has been wonderful, and I've been here about 15 months. Dr. Buckingham is great and has such a cool perspective. It’s entirely patient-focused. It’s about helping to do research that gets these devices into people’s lives. It's also cool because Dr. Buckingham wears all the devices himself before he puts them on people. One of the first studies I did was a ski study, where we took these 6-12 year olds skiing with an AP device. The group Riding on Insulin came out and did all the logistics, and we ran the medical study portion of it for this investigational device. Also, I'm on call at night sometimes so I follow patients through apps developed for remote monitoring, wuch as Dexcom Share. Some of the studies are also more hands-off, without that monitoring because that is what real-life is going to be for people using these APs. You're really putting these systems to the test and seeing how they work in different scenarios, for different people.
I’ve also been doing some other projects, one involving access to care for people with type 1 in rural areas. California and Florida are both doing echo clinics that train primary care physicians to understand diabetes and devices. That improves access to care in those regions.
Sounds like you really love your work…
I always under-estimate how much I can help someone. It’s funny, because there are just little diabetes life hacks that come from interacting and talking with other people with diabetes. They just make life easier and make such a big difference for people. It’s not really any of my training that helped me learn that -- it’s my life experience. Sure, it helps that I have the credentials to backup my answers… but I think it’s a combination of having a combination of creating support for others from something you’re going through yourself.
It also helps support yourself. It’s not physically or mentally draining, it just feels good. I like helping people. It comes very naturally to me, to have conversations with people about diabetes, and I saw through CWD how much relief I could give to parents of kids newly diagnosed with diabetes, just by being there, and showing that I've had type 1 for 29 years without any complications. You can see their shoulders and face relax, and the stress just flow away. What an amazing thing to do for someone! To me, I’m here on this Earth, why would I not give as much back as I can in my lifetime? It’s still hard for me to accept that I can’t save everyone, but I gotta try.
Any big observations about the healthcare side of diabetes?
I still hear providers say things like, 'My patient knows all this stuff and is super-enthusiastic, but I’m the provider and I know best.' I just can’t wrap my head around that, still. To me, everyone knows their own diabetes best. It’s such an individual disease. I think it’s interesting that healthcare providers sometimes feel left out.
Thanks for sharing your story, Marissa! And for the record: We reached out to your dad Jeff Hitchcock, and this is what he tells us:
"Like a lot of kids who grew up attending Friends for Life conferences, Marissa was inspired by many of the incredible healthcare professionals she met over the years to pursue a career in health care. I am proud of Marissa, but all credit goes to her. Really. Brenda and I are just fortunate not to have messed things up on the way."
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Originally published at DiabetesMine on Feb. 1, 2019