5 Minutes With Diabetes Entrepreneur Kelly Dawes

This week, we sat down with certified diabetes care and education specialist, fitness instructor, entrepreneur, and founder of the nonprofit Grownup T1Ds, Kelly Dawes.

From working in dialysis care to becoming a nationally recognized fitness instructor specializing in diabetes and senior fitness, Dawes has made a career of helping others thrive with diabetes. Following the isolation of the COVID-19 pandemic, she turned her knack for connecting with others into a blossoming organization that brings adults with diabetes together to find strength and joy in community.

Fresh off a trip to Thailand where she celebrated her 44th “diaversary,” Dawes opened up about her own type 1 diabetes journey over the years and what’s helped her navigate the highs and lows.

When were you first diagnosed with type 1 diabetes and what did life look like after for you?

It was 1981, which was before we had A1C tests or even meters to monitor blood sugar. We had poor-quality insulins made from animals. The outlook was honestly a little bit bleak back then, and I was a child at just 12 years old. But the journey since then has been a whirlwind. There was a span in the beginning where I felt like I was rushing everything in life because it felt like I wasn't going to be here long. There was a rebellious side to me because I figured, “Well, I'm gonna die young anyway,” so I did some crazy things. I still own dirt bikes, I've skydived four times, I was a boxer, and I traveled. I was almost always pushing the limits. I look back now and think about how we couldn't even monitor blood sugars back then, and I was still out there doing all these things. But I have no regrets, and because of all the advancements and changes that started settling into place, I was finally able to slow down and think, “Okay, I'm going to live longer.” I'm thrilled about everything that's going on in the diabetes community, and I feel happy, healthy, and at peace with my journey.

Which advances in diabetes management have made the biggest impact in your life over the past 44 years?

There have been so many. The qualities of insulin we have now compared to when I was diagnosed have made a huge difference. The animal-based insulins were so harsh, and there was so much inconsistency [from batch to batch], that there wasn't always the same dosing. Pre-bolusing was harder because you didn’t always know when it would kick in, and the low blood sugars were horrible and would stick around for so long. It was the most unpredictable type of insulin. I remember when I first started a long-acting insulin, it felt like the most incredible thing I had ever used, and this wasn't that long ago.

Another big advancement was continuous glucose monitoring (CGM) and time in range. Twenty or thirty years ago, my A1Cs were considered “excellent.” I was always around 6%, but I still felt like I was on a rollercoaster. I was constantly brushed off by doctors who’d say, “You’re doing great, don’t worry about it!” But I was worried, and I was pleading with them to listen. We didn’t have terms like time in range yet, but I was already living that reality and trying to explain it. I’d say, “This A1C is just an average…and that average comes from me bouncing between the 20s and 30s all the way up to the 400s. That’s not ‘great.’” 

I was exhausted and tired of spending time in the emergency room. Still, no one heard me. I was constantly judged and dismissed and told, “Kelly, you worry too much about numbers.” But I knew what I felt. I knew the toll the rollercoaster was taking. That “great” A1C was masking the extremes I lived through daily. But I always showed up to those appointments ready to advocate for myself, even when it felt like no one was listening. It was such a huge point of frustration, but I’m also grateful that we finally have the tools, like CGM and time in range, to talk about this and make a difference.

We’ve come such a long way. Because of these incredible advancements in technology, science, and research, I feel like it has lessened the burden of management. I feel like there's more we can predict. Even though it's still almost unpredictable sometimes, it's easier.

How has diabetes stigma and other people’s perceptions about diabetes impacted your journey over time? Is there any advice that you would give to people who are navigating stigma, shame, or fear?

 I think fear is a big one for so many people. And it's understandable, you know? There's so much unknown, and there's so much we've heard about diabetes, whether it's on commercials, the internet, or TV. They show people with diabetes rapidly going blind, into renal failure, or having all these other complications. So there's a big amount of fear for people. 

As far as stigma, wow, they’ve been around forever. I’ve pretty much heard every stigmatizing comment there is. Now, I'm at the point where I just laugh. I try to find the humor, but I also recognize it's the fact that people don't know what they don't know [because of the inaccurate representations they’ve seen]. I don’t think stigma always comes from a place of judgment or cruelty – I think it's often a lack of education, and I'm always happy to take the time to educate others.

Community support always comes up as a key theme in our conversations. Can you tell me a little bit more about your nonprofit, Grownup T1Ds?

There are a couple of things that led me toward starting Grownup T1Ds. I’ve made a lot of friends with diabetes over the years. Back in 2020 when we were all in isolation from the pandemic, there were tons of virtual meetings going on [in the diabetes community], but it didn't feel the same. We needed the humanity, the human connection. I was sitting in a meeting one day led by Dr. Anne Peters (a world-renowned endocrinologist, professor of medicine at USC, and director of the USC Clinical Diabetes Programs), and she was saying that some of her most resilient patients are people with type 1 diabetes. However, during the pandemic, she saw a huge change in this community where people were feeling isolated and coming in for depression. And I remember thinking, “Holy cow, we are!” We already feel so isolated as it is living with this invisible disease. 

That’s when it really hit me. So when the pandemic improved and things were more open, I decided I was going to host something. I've always been involved in the diabetes community, so I already knew a lot of people who might want to join. I reached out to a few friends and we organized an outdoor meetup. There were 15 of us who came from all over southern California, and we had the best time. We all wanted to do it again, and then I just built it up from there. There was no focus aside from the fact that we'd been isolated and felt like we needed the human connection. And because I especially felt like I couldn't find a place for those of us with diabetes in midlife and older, I wanted to start bringing that in. Then my sister ended up being diagnosed with type 1 diabetes in her 50s, and that’s when the adult focus really got folded in.

That’s something so special about what you’ve created with Grownup T1Ds: A focus on adults living with diabetes. Can you tell me more about why that matters and the impact you’re making?

There is a huge misconception about adult-onset type 1 diabetes. There's always been this thought that type 1 diabetes is a childhood disease, but the incidence of adult-onset is rapidly rising – and we’re also living longer than ever before. Adults with diabetes need a place, too. Even if I’ve lived with it 44 years and one of the new attendees comes in at 65 years old and was diagnosed three months ago (which has happened, by the way), we still get it. We get each other, and there's mutual support.

I also want others to see people like me and others who are 60 years into living with diabetes and think: She looks healthy, she's thriving, and it's going to be okay. There is a need for that because there are things that happen later in life and midlife, whether it's navigating a colonoscopy, going through menopause, or navigating the loss of a parent or loved one, that all impact diabetes, so having that extra support is fantastic.

How are you hoping to expand Grownup T1Ds in the future? Are there any ways for people to get involved and get updates about your work?

We're currently only in Southern California, but we are spreading out. In April, we're going to be in Long Beach for the first time. We’re going to the Inland Empire soon and LA later this year. 

We're still pretty much a newly formed non-profit with no funding. Our wheels are spinning, and we're going, going, going. Because of this, we've reached hundreds of people and have changed so many lives. I want to keep going, build the momentum, and hopefully start hosting in other states and opening chapters where someone can take over. I know so many others have similar passions, and we get so many messages from people wanting to support. I'm always there, you know, and so are our attendees and friends. We’re always connecting people with similar experiences; for example, I was able to connect someone navigating a new diabetes diagnosis induced by cancer with two other friends with type 1 who recently went through chemo. This community is so incredibly supportive and loving, so it's incredible to see it building and growing. People feel safe and feel like they have community support.

Can you share one final piece of advice that you would give to somebody newly diagnosed with diabetes?

This question always comes up, and I always say that I promise it's going to get easier. Early on, you're kind of on a rollercoaster. And sometimes it’s still like that. But when you’re first diagnosed? There are so many ups and downs while you’re trying to figure out the proper dose or trying to start a pump and figure out things like basal rates. A lot of it's trial and error, and it’s really hard, but it’s going to be okay. It's going to get easier. And community helps, too.

Read more stories about community support and aging with diabetes here:

• 6 Tips From Someone Who Has Lived With Diabetes for 50 Years
• Aging with Diabetes: A Journey of Triumph and Resilience
• Diabetes Management in Older Adults