Today is National Siblings Day that's meant to celebrate relationships between brothers and sisters everywhere. Sibling relationships can of course sometimes be tricky when diabetes comes into play.

On that note, we're happy to introduce identical twin sisters Shelby and Sydney Payne who hail from the Boulder, CO area. This pair of 26-year-olds are both aspiring medical professionals who've been quite involved in diabetes through the years, even though only one of them lives with T1D, while the other does not.

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The Payne twin sisters: Shelby (left) who lives with T1D, and Sydney

Here's our recent interview with Shelby, who notably uses a DIY closed loop system, and will graduate from Vanderbilt University Medical School in Nashville, TN, in early May. For her first job, she'll be moving to Denver, CO, for an intern year in medicine before returning to her undergraduate alma mater of Stanford to work in radiology!

 

Talking with a Lone Twin with T1D: Shelby Payne

DM) Hi Shelby, can you share the story of how diabetes first came into your life? 

Shelby) I was diagnosed when both Sydney and I were 11 years old, and I remember it vividly because it was Christmas Day 2004. I’d been feeling tired the past few months before that, really thirsty and my mouth was so dry it felt like sandpaper. I didn’t enjoy doing the things that I normally loved doing at that time, which was soccer, snowboarding, skiing, basketball… really just being an active kid.

Parents of the other kids on the sports teams -- mainly basketball since it was winter – started commenting on how skinny I was looking and my parents were concerned and confused. They had never come across type 1 diabetes before since I am the only one in my family to ever be diagnosed. They were thinking, “She eats a lot and is pretty healthy, and we don’t think she’s got an eating disorder, but everyone keeps making these comments…” Of course, my twin sister Sydney was there and everyone was comparing the two of us, too, thinking something wasn’t right. I ended up losing about 30 pounds and was going to bathroom all the time. 

I used to joke that developing diabetes made me a faster snowboarder because I’d go down the hill super-fast to get to the bottom and have enough time for the bathroom before meeting up with friends and getting back on the chair lift. Diabetes in the early stages made me go faster, to keep up with my friends! And finally, Christmas Day came and after we’d done all the family festivities, I was so weak that I couldn’t walk and my mom had to carry me into the hospital. Sydney has written that she remembers waking up and I was gone. We had gone to the hospital and my blood sugar was 1300 mg/dL. My A1C was 18% and I was pretty sick, to put it mildly.

OK, so do you remember much about that initial hospital experience?

I remember asking two questions at the time: “Am I going to live?” The doctor told me yes. My second question was, “Can I still play soccer?” He said yes. And I said, “OK, give me a shot of whatever this insulin thing is and let’s get to it. I was actually transferred out of the emergency room the next morning.

We grew up just outside of the Boulder, Colorado area, so we were at the local ER there and later at Denver Children’s. I was sent to diabetes education that next morning (after the ER) and I was part of a study at the time for newly diagnosed kids being discharged to home care right after being stabilized. So it was pretty quick, even though we did continue getting diabetes education and care from home over the next week.

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The summer after Shelby (on the right) was diagnosed with T1D, before she and her twin sister Sydney (left) both went to diabetes camp in the Colorado mountains.

Isn't it unusual that only one identical twin would be diagnosed with T1D?

My standard response is that we are the perfect example of what all the research is looking at for autoimmune diseases: that there is some combination of a genetic predisposition and environment trigger that we need to figure out on T1D. As identical twins -- and we're definitely identical and have been genetically tested in a student to confirm -- we have the exact same genetic make up/predisposition. However, something triggered the autoimmune response to occur in the cells of my body whereas that didn't happen with Sydney. She still isn’t out of the woods, and will forever have a higher change of developing T1D, but for right now she does not have it. We are in a TrialNet study and she does not currently have any of the antibodies that have been associated with T1D development, which is good news. We don’t have any other family members with T1D, so as of right now I am the only lucky one :)

{Editor's Note: It turns out that only about a third of identical twins both get diagnosed -- while in the other two-thirds of cases, it's just one.}

Did your T1 diagnosis change anything between you and your twin sister?

It didn’t really affect how Sydney and I were treated, for the most part. We continued being close and best friends and doing pretty everything together, going to school and playing soccer and having very active lives. I guess the only difference was that at school, if someone brought cupcakes and I wasn’t able to participate, she would join me in solidarity and not have any – kind of sticking up for me, which was awesome. I also had my own snacks with insulin timing during school, too.

That is awesome! Did your sister take on any other diabetes tasks for you?

Yes, Sydney’s always been there for me. The other thing was that we carpooled an hour each way to soccer practice each day, since we were on a pretty competitive team, and because of that drive we didn’t have much time to pull over and stop just for me to take injections. I remember Sydney giving me injections all the time while were in the car. She became my personal “insulin injecting” doctor, you might say. We had to get there on time. Soccer was important.

Is she very involved in your T1D?

She always knew everything and has been well-versed in diabetes – from the technology I was using to the basics in management. Even now, she can tell you about anything related to diabetes and carb-counting. We are both in the medical field, and she’s also been involved with Artificial Pancreas studies in camp settings and beyond.

Having her support has been incredible. I’ve always pretty much done everything diabetes-wise myself and haven’t had to ask too much from other people. But it’s been nice to always know Sydney is there to support me, to have her backing and be a second voice when I’ve needed it. She doesn’t have diabetes, but continues to take part in the TrialNet studies and do what she can. Really, she's a best friend that is just built into every part of my life – diabetes or not.

You both went to the same medical school and overlapped there for several years, right?

Yes, we’ve been together in medical school at Vanderbilt in Nashville, TN. But we didn’t start right away after graduating from Stanford in 2014. As I mentioned, we were both into competitive sports and wanted to stay active so we went in our own directions for that.

I wanted to stay competitive and do something fun, so I started snowboard-cross – which is basically motocross racing but with snowboarding on ski slopes. So I moved to Montana to compete in that for a year before starting medical school at Vanderbilt. Sydney actually wasn’t ready to hang up the cleats and moved to Europe for two years to play professional soccer, so that’s why she's a year behind me. She’s just finished up her third year, and I have just finished my last day ever of medical school. This has kept us busy and Nashville has been a great place to live.

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The Payne sisters, Sydney (left) and Shelby (right)

Congrats on your gradation from medical school! What’s next?

I found out recently that I’ll be going back to Stanford for my residency, in radiology. It’s my first choice. But I’ll be doing my intern year in Denver first. So after next year, I’ll be back in the Bay Area. Sydney will have one more year at Vanderbilt and then she’ll find out where she’s going after that. As of now, she hasn’t decided what her focus will be. But it may be radiology as well, even though I’m trying hard not to influence her decision too much.

Any reason you’re keen on radiology?

I’m hoping to combine some of the imaging and radiology stuff we do with some of the interventional procedures that I’ll be learning, and merging that with type 1 diabetes and research out there. I am excited to be going back to Stanford where I’ll be around people who are pioneering these type of new ideas, and applying that to the next wave of diabetes and health technology. That’s something I'm definitely interested in, the concept of “hacking healthcare.” Sometimes things move too slowly and we need to force it go faster. That’s really what this community has done with #WeAreNotWaiting and I think it’s fantastic.

So you met the legendary endo Dr. Bruce Buckingham while studying at Stanford?

Yes, and he’s been a huge influence in my life. We first met when I moved out to California for the first time for my undergrad. He was my doctor and research mentor during that time, and I was working with him on the early Artificial Pancreas trials. Those were the first closed loop trials where we were refining algorithms and looking at looping in different activity settings. Sydney was working with him as well. We met up every so often through the years, either when he was here at Vanderbilt or I was back visiting the Bay Area.

Is that how you learned about homemade closed loop systems?

When I was out interviewing for residency at Stanford in December, I met with Dr. B. We talked about getting started with Looping. The big advantage that we discussed was having the automated control system running during procedures or surgeries where I am “scrubbed in” for sterility. Ssome of the surgery cases can last 10 hours and there’s no way for me to bolus insulin or eat glucose without breaking out of my sterile gown and having to rescrub again.

That was the spark that made Dr. B say that I should give Loop a try going into my intern year, so it would just adjust accordingly without my having to touch it. I’ve been following along for a while, so I was excited when he suggested it. Luckily, he was able to secure an old Medtronic pump for me and both he and his current fellow Dr. Rayhan Lal (who’s been connecting a lot of people in the #WeAreNotWaiting community to Looping) were going to be in Nashville in early February for the Diabetes Education and Camping Association (DECA) conference. So that’s where we agreed to meet and get it up and running.

What diabetes tech were you using beforehand?

Before starting on Loop, I’d been using the Tandem t:slim pump, but not the newest Basal-IQ feature that shuts off basal insulin when it predicts you’re going Low. I was on the OmniPod and a Dexcom before that. I’ve always loved being a guinea pig in diabetes. We’re always experimenting on ourselves and trying to find different hacks and things that work for us. I like tinkering like that. We can always revert back to what we were doing before if need be, but why not try something new and push things forward to see if it works better? So I was very happy to go on the Loop system and see what I can do with it, and maybe contribute to the bigger community learnings. It’s an exciting time and I like continuing to adapt. 

People say the start of Looping can be difficult. How were the initial weeks for you?

The first week was terrible! Part of it was that I’ve been so used to micromanaging my own diabetes care, and looking at my data and adjusting... Just being my own Artificial Pancreas, which takes a lot of work. It was tough to get used to letting that go at first. I’d gotten an A1C of 5.9% before starting Loop, so I was doing pretty well to start with. But for me, the goal wasn’t to improve my glucose control. It was about reducing the amount of worry and time I put into managing my diabetes. Even if my A1C goes up a bit, it would be a success for me if I’m putting less hours of worry and stress about diabetes into my day. Right now, especially as I start my intern year before Stanford, it’s about reducing that burnout and energy spent on diabetes.

After that first week once I got used to it, everything’s been fantastic.  There is still work involved, and I still am fine tuning settings as I progress. Overnight, my glucose control has been perfect and I get to sleep without interruptions. I’m definitely low a lot less and am pretty happy with it. I think it’s a great tool for many people, even though you do need functioning technology and access to it.

Can you share more about your involvement with the Riding on Insulin camp and advocacy?

Sure, I do coaching at Riding on Insulin snowboard camps, which I’ve been going to for many years now. Interestingly, I first met the founder Sean Busby when we were both in New Zealand. I was there interning in the summer, coaching at a futbol (soccer) academy. It turned out Sean was doing some back-country expedition guiding for snowboarding in New Zealand that summer. We’d been talking, and realized we were both there, and I ended up picking him up from the airport at 3:00 in the morning and they crashed with the family where I was staying. So that’s how we met.

From there back in the US, I started volunteering with his organization in the summer of 2012. I started coaching that next winter and have been doing it ever since. I try to make it to one or two camps a year, but it can get tough with a medical schedule. But it’s something that matters to me -- being there for kids with type 1 where I can also meet other adults with T1D. You can’t really go wrong when you can combine something fun like snowboarding and diabetes.

At the end of the day, it's about pushing boundaries. That's what I love the most and try to do everyday.

 

Thanks for sharing your story with us, Shelby! We {heart} your twin sister for living the diabetes alongside you, to support you the very best she can.