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Diabetes on TV and in movies is rarely anything close to accurate. Turns out, those media misconceptions can be real-life harmful. This week, Stacey is joined by Dr. Heather Walker, the co-author of (Un)Doing Diabetes: Representation, Disability, Culture and Dr. Phyllisa Deroze, who contributed a chapter called “Laughing to Keep From Dying: Black Americans with Diabetes in Sitcoms and Comedies. Dr. Deroze & Dr. Walker both live with type 1 and both have difficult diagnosis stories that influenced their experiences with diabetes going forward. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Dr. Phyllisa Deroze More about Dr. Heather Walker ---- Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, diabetes on TV and in the movies is rarely anything close to accurate. And those media misconceptions can be real life harmful. Here's one from the sitcom 30 Rock. Dr. Phyllisa Deroze 0:30 Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing. There was a diabetes diagnosis and the next scene, he's already imagining himself with an amputation. Stacey Simms 0:49 That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community. And I say that because 2021, I decided I was going to focus on technology for the year, I was going to try to do as many episodes as I could, talking about new technology talking to these companies. And I did that although I gotta say the log jam at the FDA made that a little difficult, right? I mean, we thought we'd have a lot more new technology. And a lot of companies will not talk about stuff until it is FDA approved. So this year, I'm going to stay with that because the technology episodes are what you have told me you are the most interested in, in fingers crossed are going to have some approvals pretty soon. But I gotta tell you, I've also decided that I'm going to do shows on just whatever the heck I find interesting. I started this show seven years ago, this coming summer, and honestly, this might be the last year of it in this form. I mean, I love it. I love doing this but seven years is a long time for any project. I have some new things that I'm working on. I'm not sure how much time all of it is going to take. I'm not abandoning the podcast by any means. I want to hear from you too. As we go forward. You know, as the year goes by, I will keep the lines of communication open. We will figure it out together. This episode does fall into the category of something I am fascinated by and I love to talk about and that is diabetes in media. And by the way separately. Both of my guests this week have bananas misdiagnosis stories, we get to that right out of the gate. Wait till you hear what one of their doctors ended up doing. I have never heard this happening before. It was pretty wild. And we will talk about the book I mentioned that it is (Un)Doing Diabetes Representation, Disability Culture. It is authored by Dr. Heather Walker and Dr. Dr. Bianca C. Frazer. It contains essays by other authors including Dr. Phyllisa Deroze a little bit more about the book in its public description. It says undoing diabetes is the first collection of essays to use disability studies to explore representations of diabetes across a wide range of mediums from Twitter to TV and film to theater fiction, fan fiction, fashion and more. In undoing diabetes Authors deconstruct assumptions the public commonly holds while writers doing diabetes present counter narratives community members create to represent themselves. And just a little bit more about my guests. Dr. Heather Walker is Associate Director of qualitative research at the University of Utah health. She was diagnosed with type one at age 11 in 2001, and Dr. Phyllisa Deroze began blogging at diagnosed not defeated almost immediately after being misdiagnosed. She found out later with type two diabetes in 2011. And now she has been correctly diagnosed with LADA. Dr. Phyllisa Deroze is also the founder of Black diabetic info after the interview, and it's a pretty long interview. And that's okay. They have a lot of great stuff to say, I'm going to come back I want to tell you about something that happened to me. It's not quite diabetes in media, but it is diabetes jokes. So I want to tell you how I handled something in a Facebook group. But I'll come back and do that after the interview. Dr. Phyllisa Deroze, Dr. Heather Walker, welcome. I'm so happy to talk to you both. Thanks for coming on. Unknown Speaker 4:50 Thank you. Stacey Simms 4:51 So let's start if we could, I mean there's so much to get to and I was so excited to see you both at friends for life and see the presentations that you were doing but which You mind kind of backing up a little bit and kind of letting people get to know you? We could start just tell me a little bit about your diabetes diagnosis story. And Phyllisa, let me let me ask you to start with that if I could. Dr. Phyllisa Deroze 5:12 Um, yes, I was diagnosed shortly after getting my PhD in English literature. I had moved to North Carolina, I experienced the classic symptoms of hyperglycemia. I had seen a physician who didn't check my blood sugar told me that I just needed to drink Gatorade because my electrolytes were off. A little later I was in the hospital. Blood sugar didn't register. Finally, I think first reading was like 597, or something like that. So I was told I had diabetes, and what type didn't get clarified until I was discharged. When I was discharged. I was told that I had type two diabetes, and I lived with that diagnosis for eight long years, it was inaccurate, I was misdiagnosed. I live with latent autoimmune diabetes in adults. And I was correctly diagnosed and joined the T1D group in 2019. I get this Stacey Simms 6:06 question. Every time I speak to somebody like yourself who was misdiagnosed like that it happens so often. How do you live with what is really type one for all that time? I mean, I can't imagine you felt very well. Dr. Phyllisa Deroze 6:20 I did. Okay, after diagnosis, I had a pretty long honeymoon phase, I actually lived about three years with just diet and exercise. I think one thing in the T1D community is that we don't talk enough about honeymoon phases and people who have latent autoimmune diabetes and adults, because so much of the common knowledge about type 1 diabetes is that everyone is insulin dependent. And that's not necessarily true, everyone will become insulin dependent. And that's an important message, because I never thought to have test done until I went into DKA. Again, so I myself didn't know that it was possible to have type 1 diabetes have a long honeymoon period and be misdiagnosed. Stacey Simms 7:09 Yeah. The more I learned about Lada, it is so similar, but it's so different. There's a lot more to it, I guess, is what I would say, than I had realized for sure. Heather, what is your diagnosis story? When were you diagnosed with diabetes? Dr. Heather Walker 7:21 So I was diagnosed at 11. And I also sort of have a misdiagnosis story. So I had diabetes, and I was in what I assumed to be a honeymoon phase for three months before my diagnosis actually came around. Because I was seeing a physician at the time who looked at me, skinny white girl, whose parents were really afraid because she kept losing weight, who was just about to hit puberty, and he thought eating disorder. No matter how many times I told him, I was eating everything in sight and drinking everything in sight. That's still what he firmly believed. Luckily, at about three months after I started coming in to see him for this and for the symptoms, he went on vacation, and I got to see his pa instead. And his pa John, you know, it's so funny. I don't even remember his last name. But just he's just warmly John to me, right? He just looked at my chart, and he knew right away, it's like, oh, you have diabetes, you know, so calmly, and I remember that freaking me and my mom out. We were in the appointment. It actually was my dad. But still, the first thing that we did was went and got me a doughnut because I think my dad was like, alright, well, maybe this is it. You know, he'll never eat another doughnut. Yeah, like, we really don't know about this, we don't know what's gonna happen. And so they didn't do a glucose tests on me. They just drew blood. So we didn't know right away anyway. And then it was like, you know, the next day, they called and said, You need to come to the hospital and for US history. Stacey Simms 8:45 I'm guess I'm gonna get ahead of myself a little bit here. I don't want to start drawing conclusions too early in this interview. But it is interesting how both of you were misdiagnosed. Somebody else made an assumption, because of how you present it to them. I've got to imagine. So Heather, let me ask you. And then Phyllisa, I want to ask you the same question. But other how has that stuck with you? I mean, you you kind of set it so matter of factly they're like, Hey, he assumed I had an eating disorder. Did you kind of carry that with you? Dr. Heather Walker 9:11 Oh, yeah, absolutely. I think I got a huge chip on my shoulder. From that. I mean, there's something about you know, being 11. And being in a world that already doesn't take you seriously, and then have a life threatening disease thrown at you. And your doctor doesn't believe what you say, even before diabetes. And Stacy, I've heard on episodes of your podcast you talking with with teens about or people who were teens with diabetes, about how fast it speeds your life up, right? Like you don't really get to have a childhood you don't really get to be a teenager and like, you know, carry on with reckless abandon because you just can't because there's all these safety things that you need to take into account. And so, but even before diabetes, I was kind of like that, like I was, you know, a 30 year old and a 10 year old body. I've been the same Age since then until now, but that, for sure gave me a big chip on my shoulder. It made me want to like, look into everything and see as it's happening to other people is like what's going on with this diabetes stuff. Stacey Simms 10:13 Phyllisa, I'm curious for your experience too, because as you you kind of already said something interesting, which was like, Well, I didn't know how were you supposed to know? Right? The doctor supposed to know. Dr. Phyllisa Deroze 10:23 Right. What's interesting is that when I was told that I needed to look into LADA because I had given a speech in Dubai to a roomful of doctors from the MENA region, Middle East and North Africa. And I was simply telling them my diagnosis story, very similar to what I share with you is a little more in depth, but pretty much that was the basics. And you know, I'm 31 years old at the time. And so during the q&a, some of the physicians from Tunisia, they raised their hand, and I was like, yes, they were like, well, your story kind of sounds more like LADA than type two. Are you familiar with it? And I said, not really. I mean, I know Cherise Shockley has it, but I don't know any more details than that. And it was at the lunch afterwards, one of the physicians came up to me and she said, you really ought to look into seeing if you have a ladder, and don't stop until you get the answer. And that kind of haunted me like, don't stop until you get the answer. But I just thought it was a simple request. So I asked my Endo, I got told no, I asked three months later, if I had ever been tested, the answer was no. Well, can I get tested? No. I saw a second opinion. No, you have type two. So I definitely think their view of me being an African American woman living with obesity played a lot into the constant denials. It took me over a year, another decay episode, and begging my gynecologist to run type one antibody testing for me in order to get it. So it wasn't easy. I literally had to not stop until I get the answer. Dr. Heather Walker 12:11 For Phyllisa, it was your OB they finally gave you the testing you wanted? Dr. Phyllisa Deroze 12:15 Yes. Because I told her, I can't get an endocrinologist to run this test. I know I'm in decay, a I'm losing weight rapidly. And she listened to me and she said, Okay, she said, I don't do endocrine, I do you know, OB GYN. So we were literally on her computer on Google trying to find the codes to request the testing. And so she was calling around, what do I put in to order this? And I remember when she called and she said, Listen, you know, this is out of my field. But come get these results, because your endo was going to need to see them. That was all on me. I got the results. I just remember seeing the get 65 should be below five. And mine was greater than 7500. Stacey Simms 13:05 Oh, I'm almost speechless. I mean, I'm not I'm never actually speechless. I came in less than that happened. But the idea that you have to work so hard to get those answers, I've got to assume just like with Heather, that had to inform not only your experiences going forward, but the way you help other people because you both are extremely active in the community. You You're both very prolific writers, you both have, you know, studies and presentations that we're going to talk to, but Felicity, that whole experience with somebody else saying, Well, I think you have lotta to I got to get answers for myself to finally getting them. When you look back on that, how does it inform how you talk to other people about Dr. Phyllisa Deroze 13:43 diabetes? I tell people definitely to be way more assertive than then imagined. Like, I honestly did not think it would take me constantly asking for the results. I thought it was like a simple test. I mean, you're testing my cholesterol, you're testing my a one C, like you're already getting a vial of blood, like just check off one antibody. So I thought it was something simple. And it turned out it was not, which was very frustrating for me. Because like in that I realized my education level didn't matter to them. I was literally like you are African American living with obesity. And that was what I believed to be their motivating factor to deny me testing. And what's so problematic about that, in addition to everything else you can imagine is as my physician Wouldn't they want to know that they're treating the right condition. Yeah, I'm asking so my records actually have a note from my endo saying, Melissa asked multiple times for type one antibody testing, and I denied it Stacey Simms 14:55 literally says I denied it in your file. Dr. Phyllisa Deroze 14:57 Yes. Wow. Stacey Simms 14:59 I'm just sorry. I got to ask, did he show that to you as an apology? Or did you sit there in the room while you made him write it? Dr. Phyllisa Deroze 15:05 What I did was I refused to leave the appointment. I love it until there was this moment of record, like, I need you to recognize that I have been asking you for over a year for this test. We just need to come to that because it was like, Oh, you need insulin, let's go. And, you know, I was kind of being escorted out of the room. And I said, No, I'm literally not going to leave this chair until we have this conversation. And so I didn't know that my endo would put it on my records. But I definitely refused to leave until that conversation was had, they did apologize. And there was a note and my files. Stacey Simms 15:47 It just didn't have to be that hard. This could have been an episode in and of itself. Want to make sure to get to that the research or the publications that sparked my interest here. Right back to our conversation and right was like kidding about the diagnosis stories, and then her doctor putting in her chart that he was wrong. Oh my god. Alright, Diabetes Connections is brought to you by Dexcom. I want to talk for a minute about control IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know, I hardly expect perfection, I really just want him happy and healthy. And I have to say control IQ, the software from Dexcom. And Tandem has completely exceeded my expectations, Benny is able to do less checking and bolusing. And he is spending more time in range. This is in a teenager, a time when I was really prepared for him to be struggling, his sleep is better to this is great for all of us basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everybody is sleeping better. I am so grateful for this, of course Individual results may vary. To learn more, go to diabetes connections.com and click on the Dexcom logo. Now back to the interview. And we are moving on to Dr. Walker's book. Heather, tell me about the book that's coming out. Dr. Heather Walker 17:14 Okay, I'm so excited to be talking about this. So you might hear that excitement in my voice. So it's awesome. The title of the book is called undoing diabetes representation, disability culture, that's a full title. And it's going to be released very soon, by the end of the year, we hope it's a collection of essays that looks at diabetes in a new way, the volume or the volume as a whole. You know, it points out that all the stereotypes of diabetes that the public really buys into are like maintained through a lens of individualism, our society looks at diabetes as a problem of the individual person right of their choices. And so to respond to that public tendency, right to like focus on the individual, all of our authors in the book do the opposite. So in the collection, they ask questions like, What do individualistic stereotypes reveal about the social conditions for the diabetic person? So it like flips it on its head? And also what do they conceal, right? What is stereotypes hide? What do they prevent us from seeing? And how do these like harmful narratives, these harmful assumptions, these stereotypes that just break down our community? How do they reinforce ideas that the public already has, for what constitutes like a normal or a good body, which is just like, as a person who's living with diabetes, this makes me so excited. And then I'll just add one final thing about the book, which is our collection is really unique in that we use disability studies frameworks to unpack all of these questions. What are disability studies? So this ability studies is a field of study that looks at the social conditions of disability. So how is disability perceived in society? How is it represented on the screen, and all of those types of things. And so we have frameworks in the field that we use, it's kind of imagined, like a camera lens, right? That's kind of like a framework and the camera lens has a filter on it. And so when we look at this movie, or this film, we're looking at it through a specific lens with a specific filter. In our book, all of our authors are looking at different types of media, through these disability studies, frames or lenses, and sort of seeing how they operate in society and what they do, and then poking holes at what it does. And every chapter is brilliant, and Phyllisa is going to talk about hers, but as a volume, like I could not be more proud of this collection and all the work that it does. And all of like the change and the shifts it's going to make for readers. Stacey Simms 19:43 It's so interesting to me because of the mediums that you use so let's let's ask Felicity if you want to if you could talk about what you presented friends for life, what you talked about you were looking at TV shows, right and not unfortunately not more current ones which sometimes get it right. Dr. Phyllisa Deroze 19:59 Um, yeah, I was the title of my chapter is laughing to keep from dying black Americans with diabetes in sitcoms and comedies. So I was looking at television shows as well as movies, and focusing on how those representations make meaning of diabetes within African American communities. Part of this started, when I thought about the first time I heard you have diabetes, and I was in the emergency room, my first thought was, I'm going to die. Like that. Was it? Like, I just thought like diabetes meant death? And when I started unpacking that, to find out where did I get that messaging from? Because no one in my family has diabetes. I didn't personally know anybody with diabetes. It really came from television and film, and of course, our media. And I thought it would be really nice to look at some of these classic movies and TV shows that are very popular in African American communities to see what story is told when you focus on the diabetes characters. Can you talk about some examples? Yeah. So for example, like Soul Food is one of those classic staple in African American film, a memory just like the color purple is something that people cite quotes from all the time. But when you look at Soul Food, it really stems from Big Mama who has diabetes. We understand this because she burns her arm on a stove. And a couple of things later, she passes away, she has an amputation and then a stroke. And she's no longer with us. The Big Mama character also comes up in Tyler Perry's plays and his films in his television shows. And again, these are staple matriarch characters who have diabetes. Now Madea lives on because that's a part of, you know, Tyler Perry series, but she has diabetes Boondocks I look at and of course Blackish. So blackish, I would say is probably where we first see the the image turn, where we first see a character with diabetes, checking their blood sugar, and all the other stuff we don't. And so what that tells us is that diabetes is going to cause either a slow death or quick death, perhaps an amputation, if you're familiar with 30, Rock. Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing, there was a diabetes diagnosis, and the next thing, he's already imagining himself with an amputation. So when we look Stacey Simms 22:59 at something like this, what do we take from it now? I mean, we you can't go back and change those representations. What do you want us to kind of learn from them. Dr. Phyllisa Deroze 23:08 But I would ideally like for the film industry, to change their portrayal of characters with diabetes, I mean, all characters, not just African American ones. But last year, there was the release of the Clark Sisters first ladies of gospel biopic on lifetime. The Clark Sisters are like a staple in African American culture. They were these gospel singers that were absolutely phenomenal. The Lifetime movie of them ended up being the highest rated Lifetime movie and four years. This comes out last year, the mother has diabetes. She is seen not taking her medication, not caring about her diabetes. And of course, there's all these tragedies that happen. And the thing is, when we don't see African Americans using CGM technology, insulin pump technology, we don't see checking blood sugar. What happens with those messages is that it becomes the common assumption. So when someone goes to the doctor, the doctor may think, Oh, well, black people don't check their blood sugar. And so then that begins to impact the individual prime example. I was in a setting once. And a woman said, Oh, I didn't think black people ate vegetables. What? Yes, yes, literally said this. And I was just so floored, but I thought, okay, she didn't think black people ate vegetables. And so I'm wondering like, what images you know, is she being fed? Right? Yeah. came from so the thing is, is we have to look at our television and our film, not just as sources of enjoyment for some people, but also as information that provides an understanding about certain people. So literally in all of the films and television shows that I look that there were probably two that showed the African American character with diabetes, actually living a rather fruitful life. Outside of that it was amputation and death. And so when someone is diagnosed with diabetes, like I was, and I didn't know anyone with diabetes, instantly, the first thing I thought about was death and dying. And that association that comes with it, when I hadn't seen people living well, with diabetes, I just want to say this. When I was first diagnosed, I went to Barnes and Nobles sat down in a bookstore with one of Patti LaBelle cookbooks, and I flipped to a page and she said, in this book, I had diabetes, but I wasn't going to let diabetes have in me, and I cried, right there in the Barnes and Noble, because that was the first time that I had ever seen or read or heard someone who looks like me diagnosed with diabetes, and they were determined to continue living their life. Like if you want to see that image, where do you go? Because our television and our films are not that place. And that's also the fertile ground for which black diabetic info on my website started and my blog, because I didn't know where to go for that. Like, I got it in Patti LaBelle cookbook, and I cry. But then where can I go to see it again? Yeah, didn't have an answer. Heather, I Stacey Simms 26:53 want to come back to you and ask you something I saw you posted about on on Twitter. A couple of months ago, Pixar posted a teaser for their new movie turning red, which I think comes out in the spring. And there's like a split second shot of a kid wearing some kind of what looks like diabetes device. It's, you know, an insulin pump or a CGM. And they confirmed it. I actually talked to somebody behind the scenes at Pixar and fingers crossed, we'll have them on the show in a couple of weeks. But it is a diabetes. I'm so excited. But it is a diabetes device. But you were pretty adamant about one point, would you mind sharing that? And why? Sure. Dr. Heather Walker 27:30 So when I saw that, you know, I came late to the show. Let me preface with that, right. Like, by the time I saw that trailer, the community was abuzz. Like they everyone was so excited. And what I saw was, Oh, my goodness, we see a character with type 1 diabetes. And as someone who is completing a chapter for a book of essays on representations of diabetes, you know, my antenna went up when I saw how the community was claiming that. And I just thought to myself, This is not a representation of type 1 diabetes, this is a representation of diabetes, because people with type two can and should have access to those devices as well. And so for the type one community to be exclusive, in this moment, in this grand opportunity for all of us to celebrate together, really sort of broke me down in a way, you know, I was like, Why? Why can't we just keep this open? Why can't we make this a win for everyone? Instead of saying, quote, unquote, type two people don't use these devices? And I think that the reason why it was like it was like a jab in my heart is I think that that claiming does something in society, right? It, it functions to show us that large groups of the diabetes are the type one community feel like, maybe type two diabetics aren't using that technology, because they're the ones who don't care. And they're the ones that the stereotype is about. And so that shows me that we have pockets in our type one community that buy into the stereotype just like the public does. Stacey Simms 29:06 I'm looking at the description of the book in terms of the different mediums you use Twitter, to TV to film to theater to fiction, fan fiction. Dr. Heather Walker 29:13 Yeah, we have a chapter, whatever author of your chapter covering a segment of fan fiction, and it's wonderful and actually, that author and she discloses in her chapter as well, so I'm not outing her. She also lives with diabetes herself. And I'm pretty sure she has a physical science PhD. So this genre and this discipline is new for her and she just like, Oh, she did such a great job having us understand how diabetes is being pulled into fanfiction. Alright, we Stacey Simms 29:46 now should have set this up better if you're not familiar, and I'm going to do probably a terrible job of describing this. If you're not familiar. Fanfiction is stories, poems, pictures, it's fiction, written by people who are Fans have a genre or fans of a certain bunch of characters, and then they kind of make up their own stories using the established characters most of the time. So in other words, you love Harry Potter, you write yourself into Harry Potter or you write a different adventures that the characters might have had. And it's accessible to pretty much everybody. Is that how I feel about fanfiction? Yeah, I Dr. Heather Walker 30:18 think it's kind of a, you know, once you get into it, you know where to look. You can probably Google it. And you know, I'm not even really in the world of fanfic, full disclosure and transparency. But I feel like I want to beat now that I've read, I've read that chapter. So Stacey Simms 30:34 these are characters people are writing about that loop with diabetes, or they are the just bringing diabetes into exactly as it sounds. It sounds silly, as I'm saying it out loud. Like I'm explaining it. I'm trying to, you know, hit it over the head to the to find a point. But just to be clear, Dr. Heather Walker 30:48 yes. So I think in the pieces that this author talks about in their chapter, it's situations where the characters themselves do not have diabetes, and the fanfic authors write them having diabetes. Oh, so they add that to their character. Stacey Simms 31:04 You know what we were doing that a long time ago? Because I don't know if you know, Heather, and Phyllisa, but Bob, the builder definitely has diabetes, because why else? Would he have that big belt around his equipment? Because that's where his insulin. So anytime we saw somebody on screen with that, he was like, Oh, he's got diabetes. I didn't mean to interrupt Heather. But that clarifies it for me. Dr. Heather Walker 31:23 Oh, yeah. That's a perfect example. Right is imagine that we had a fanfic author who loves Bob the Builder when they were a kid. And now they're writing the whole story about Bob, the builder and his diabetic life. It's wonderful. The book itself, Stacey Simms 31:37 is this something that's accessible to people? And I asked that I mean, is it more of an academic book, tell me a little bit more about that. Dr. Phyllisa Deroze 31:43 So one of the things that I like about the book is that it's assessable. For a large reading audience, if you are a casual reader, you can get through it, if you are an academic, you can get through it. So it's not laced with academic jargon. But again, we are using theoretical frameworks, but in a language that is accessible to everybody. So that's one I definitely enjoy about the collection, is there something in there forever? Stacey Simms 32:13 And that's a great point, because I think we do get a little nervous about academic type books, Heather, right. I mean, it's, it can be a little scary and off putting it away. Dr. Heather Walker 32:21 Yeah. And I'll just add, you know, we have, so we have several authors who are like myself, and Phyllisa, who are scholars and community members, which is very nice, and just like really brings it home. And so, you know, you kind of know, as a community member, that you're going to get authentic pieces by people who are living with this, in addition to having a couple of us who are scholars and committee members, we do have chapters from community members, from activists who don't have their hand in academia at all, and they're writing about their personal experiences. And, you know, they're still talking about representation in different media, but they're doing so from their lens existing in the community existing in the world with diabetes. And if nothing else, although I, I would also say what, you know, Melissa said was true, all of them are accessible, but especially those that are coming, you know, from the mouths of babes that are coming from our community members, who, who many people who do pick up the book already know, Stacey Simms 33:20 before I let you go, let me let me pose this question to each of you in kind of a different way. And that would be you know, full. So you mentioned blackish, being a bit of a turning point, the show where people are shown, you know, a character shown checking blood sugar. I'm looking back over the last year and thinking of a more accurate depiction of diabetes, or at least type one with the Babysitter's Club on Netflix with we'll see with Pixar is turning red, but with Greenland, you know, written by someone who's married to Greenland, the movie Written by someone who is married to a person with type one, do you think things are getting better? And and I would ask you, as well to include the black community, because we don't talk about that enough. You know, I mean, I'm trying to think if all of those I mentioned they did not feature people of color. Do you think it's getting better? I mean, what would you like to Dr. Phyllisa Deroze 34:06 see, I would like to see more diversity as we get better in the American film industry. When I look at all the films that I studied, type 1 diabetes is grossly under represented like none of these characters have type 1 diabetes, which again, if you think about myself, 31 years old, being diagnosed, I never knew type 1 diabetes could be an option. I'm still not seeing African American characters using technology wearing CGM. Often when I'm out in public. People are asking me about my devices. It's the first time you're seeing them. I'm explaining insulin pumps. And so while things are getting better, I would say within shows, television shows and films that are popular within African American characters. Progress is about Very slow on that. And Stacey Simms 35:01 Heather, from where you stand. Could you share a little bit about what you think is going on in media? Are we getting better? Dr. Heather Walker 35:07 Yeah, I think Phyllisa what you're speaking to right is incremental ism. It's like we are getting better slowly, like painfully, slowly, bit by bit. I mean, I'm inclined to say yes, only because the number of representations that we're seeing are increasing. But, you know, I'm hesitant at the same time to say yes, because we still have to ask, okay, if we even if we have more representation, are they representations that are doing good for diabetic people in society? Right, like, not necessarily, Are they accurate? Or are they you know, a direct portrayal of what people experience? But what is the public taking away from that representation? Like, what are they leaving that with? And if we have a lot more characters all of a sudden who have diabetes, but the audience still thinks, Okay, well, diabetes is still what I thought it was, right? It's like overweight people over eating, making bad choices not exercising? If that's what they're leaving with, then the answer, of course, is no, we're not making progress, even if we're having more characters. And what I find is, what I think we would need to make really big change would be to centralize a character with diabetes instead of making them a sub character, right? Yeah, like for the baby sitters club. And Stacey is not a new character with diabetes is has old, right, like we've known that Stacey has had diabetes for a long time, it just wasn't being produced at the quality it's being produced at. So that's not really even a new one. But we do have new ones, like there's a just a year and a half ago, or so there was a new series called Sweet magnolias. And one of the characters there has, or is about to be diagnosed with diabetes, and it's the same, it's the same story. It's like, you know, if you don't fix your habits, you're gonna get diabetes, and you're gonna die like your mom and all these fear tactics. And so and I really want to be hopeful, Stacy, I really want to be hopeful and say, Yes, we're headed in the right direction. But I just don't know i We need people in the writers room with diabetes, and other health conditions and disabilities, to have a direct voice and call things out before they're produced. Dr. Phyllisa Deroze 37:19 I agree 100%, we have to be in the room. Because some things they don't make sense. For example, blackish, you do see him check his blood sugar. However, once he puts the strip in the meter, he starts talking to his wife, and anyone who knows how to use a meter knows that you have about 30 seconds before you have to put a drop of blood on that thing, or else you've lost it. So even little things like that. Stacey Simms 37:46 I had indicated that was the last question, but I got one more. And that would be and II feel free. Either one of you jump in? Or both? What can the community do? You know, sometimes I feel like, you know, I stopped correcting people online a lot of the time unless it's really egregious, you know, but if they make a joke, or there's a hashtag diabetes with dessert, or things like that, like I'm tired, you know, and then you have no sense of humor, you know, gosh, what can we do to try to fix this? Or what can we do to to improve the situation? Dr. Phyllisa Deroze 38:15 I think, this research, this book, this podcast, these conversations are so important. So for example, prior to writing my book chapter, I didn't see anything talking about the representation of African American characters in television and film. Whenever I talked about diabetes characters, there was maybe the one mention of soul food, but like, there was a dearth there. So this book chapter hopefully helped spark the conversation in wider circles. And so by talking about it more, and rallying around these things, hopefully, the attention like first recognizing that there is a problem, and then getting think tanks together to talk about them is probably the best plan of action. Dr. Heather Walker 39:06 I love that. And I would just add, you know, I think what the community needs to prioritize is inclusion, right? Like, we need to give up on being exclusive, especially in the type one community, and we need to open our doors to people with type two people with Ladda. People with all like, there are so many different types of diabetes, that even saying type one and two is, is exclusive. I really believe that if we can do that, and if we can elevate the voices of people with diabetes of all types, who are also people of color, then we'll make a lot of progress in our community because we'll start seeing those perspectives that we've been missing that make us as a community really limited to our own perspective. To me, that's the only way to do it. I love the idea of a think tank Phyllisa I think that's brilliant, and just absolutely, and I'm sure you would agree needs to be diverse, right? Like it can't Be a bunch of like, white people. I don't know. There's a lot we can do. There's a lot. Stacey Simms 40:08 Thank you both so much for joining me. This is amazing. I'm so thrilled to have you both on the show, you've got to come back on there. We just kind of scratched the surface here. So thank you for spending so much time with me. Dr. Phyllisa Deroze 40:18 It's a pleasure. Thank you for having me. Dr. Heather Walker 40:21 Yeah, this has been so fun. You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 40:34 More information about my guests and about the book on diabetes all at diabetes connections.com. As you know, every episode has its own homepage with transcriptions and show notes and all that good stuff. The transcription started in January of 2020. And we're working our way back here in there, hopefully filling in all the blanks. But right now, not every episode before 2020 has a transcription. And I should tell you just I don't want to get ahead of myself here. That Pixar movie that we talked about turning red. Since our conversation, they put out another trailer and it showed more diabetes gear, another child in the movie is wearing a Dexcom. So it looks to me I mean, really can't tell yet. But it looks to me like one kiddo has some kind of pump. And another kiddo has a Dexcom. So as I said, I had a contact at Pixar. And I've got another one now. And it looks like there might be an actor, a voice actor in the movie who has diabetes. So we're to sort this all out. And I should be able to have somebody on about this. I don't want to over promise. But the folks at Pixar have been really receptive. So that looks like they won't do it too far in advance because the movie comes out in March. So as we get closer, I'll keep you posted for it. And I had mentioned a story before the interview about not necessarily diabetes in media, but about jokes. And I don't know about you, but years ago, I was on high alert for diabetes jokes, you know, I can't eat that, or the the hashtag of my dessert is diabetes. And I don't know, I got burned out. And I don't talk about it as much. I don't police it as much, certainly, but I couldn't help myself last week, at Christmas, I'm in a group. It's a very clever group. It's called fatten the curve. If you want to join it. It's a public group, a friend of mine in the Charlotte area started at the very beginning of COVID. Obviously, it's a play on flatten the curve. And as you would expect fatten the curve is all about food. And it's just become a place where people who cook and eat like to share their photos. And somebody posted around Christmas time, you know, it's my diabetic coma, and then all of this food. So I kind of did the do I want to go to I want to do this, or I want to get this person's face. So I just very nicely said, Hey, diabetes jokes are never cool. Not sure if you thought about that. But hey, the food looks absolutely delicious. You know, hope it was as good as it looked or something nice like that very casual and breezy. Just like Hey, dude, not cool. But moving on. And there's a couple of other people in the diabetes community who have joined that group, but it's not diabetes, it's just food. But you know how it is when when Facebook shows you something people, you know, jump in. So other people commented like, yeah, Stacey's right? Please think twice. And this guy apparently lives with type two posted like a non sequitur about his scientific studies and stem cells and all this stuff about diabetes. He did, obviously, not really sunk in I don't think, but he didn't respond negatively. And I just said, You know what, fine, I'm moving on, right? But then a couple of days later, somebody else popped in, it was like, nobody can make a joke anymore. You're too sensitive, and why we're just too easily offended. And that's when I was like, Alright, now I need to respond. So I very nicely, I think it was nice. You know, I wrote a response. And I said, Hey, you know, once the guy said he had diabetes, you'll notice I didn't clap back, I didn't get nasty. We are all entitled to say whatever we want. But it's important to understand that what we say does have meaning and impact. And as you listen, I know, you know, all this, I did the standard. When we joke about diabetes, we don't do this with other conditions. We don't talk about a cholesterol coma, or a high blood pressure problem when we're eating big meals like this. Why is it only diabetes? And did you realize that actually, you know, the blame and shame that can be encountered here prevents people from seeking treatment or makes them feel like it's all their fault, and nothing they do will matter. I posted all that waiting for the response. There was none, which I'm really glad about. Because I don't want to argue I just it's exhausting. But everyone's not something like that pushes my buttons and I have to save something. Hopefully that group will just go back to posting yummy pictures of food because it's been two years and we haven't had any issues like that. I mostly post pictures of what my husband cooks. Because I don't like to cook and what I do cook isn't really Facebook, really. So I guess we're often running for 2022. We are back to the Wednesday in the news episodes. I hope you'll join me for that either live on Facebook, YouTube or Instagram, or as an audio podcast which comes out on Fridays. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon, in a Couple of days until then, be kind to yourself Benny 45:07 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what's new and take some time to focus on their effort to reach more diverse voices. Watch the videos from Innovation Days here In Tell Me Something Good, a big diaversary to celebrate.. Stacey's son marks 14 years of type 1 diabetes this week. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what's coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now Amy Tenderich 0:44 stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I'm using By the way, I've been looping now for quite a while and it's a game changer. Stacey Simms 1:00 That’s Amy Tenderich, founder of DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven't told before. I was always the worst. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast. I'm going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It's a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness. I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don't tell me, which is a really fun game show. If you've ever listened to it. I do Wait, wait, don't poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we're starting to work backwards. So hopefully eventually, I'll have a transcript for every episode of the show. Thanks for your patience on that. All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week can be summed up I think in the motto of the conference. We're about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you're not reading it, I'll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you're interested at all in technology if you want to learn personal finance stories to they do that it's a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It's something she was already working on, as you'll hear before, the events of this year brought it to the forefront for many people who maybe hadn't considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it's always great to catch up with Amy. Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks. Amy Tenderich 5:46 Oh, thank you for having me. Stacey Simms 5:49 first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup? Amy Tenderich 6:09 Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I'm in the events business. And now we have COVID. And you know, what's going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we're not going to all these in person events. You know, most of us feel like we're just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that. So it's not just people sitting and watching, you know, one presentation after another, especially when everyone's doing so much of that these days on zoom. So I've been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that's so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you're able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you're talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it's you know, it's sort of oriented by table. And then what if you want to work together with the people at your table, there's even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn't have to kind of recreate that whole wheel of just understanding how the online platform works. You Stacey Simms 8:48 know, this conference is so well known, as you said, leadership technology, things come out. And we'll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation. Amy Tenderich 9:06 So yeah, what happened there? It's actually I'm kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it's sort of something that's a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it'd be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we're happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can't represent everyone. And they sent me to get more voices involved. So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you're familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we'd had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what's good, what's bad, what would they like to have changed, see change, I said, it's completely up to you guys. So I don't know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what's disappointed them or why they do the work they do, or what they would like to see change. And it's just what, you know, I can't I talked about this session is sort of unveiling what's been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes. And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it's kind of a one off, it didn't. It's not necessarily racism, it's just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there's a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren't going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there's always some people who start and don't complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that's posted online that we'll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They're worried about costs and access, and you know, finding a physician who's empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don't feel represented, they need to see more people who look like them. And that's everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product. Stacey Simms 13:43 Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that? Amy Tenderich 13:55 Is the million dollar question. And that's actually one of the things where you feel like you're sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I'm like, What do you mean, I'm still recovering from this. Stacey Simms 14:12 Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I'm so glad that we had dexcom Benny's influence started going way up around age 11. He's almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He's so much taller, everything's different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We've been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny's a one C and overall health, if your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what's next. Amy Tenderich 15:19 So I don't know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it's just about affordability and access, it's an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I'm a conduit, but I'm not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who's working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what's happening out there and then address those things. And, you know, really keep it fresh and timely. So that we're really having conversations about the things that are like currently on top of mind, Stacey Simms 16:49 it's so hard to predict, certainly, right, what's going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it's hard to figure out what's really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I know Dexcom spoke there was the there was a loop link. I mean, was there anything that really struck you or that you want? Amy Tenderich 17:19 Thank you for asking. So the fall event is actually this two day thing where one day is kind of our broader Innovation Summit, it was our first event that we ever did. And then the second day is D-Data where we go really deep on the technology. So that's why this time, the first day, we did a featured panel on telemedicine and like whole person care. That was very cool. That included Vita Health, One Drop, health first, and what’s the fourth person, fourth group that was there. I can actually look it up. But yeah, but we really because obviously telemedicine is now just medicine. Right? Right. Right. You know, it used to be the sort of add on thing that you could do if you wanted to, but you know, now it's really how care is being delivered. And the whole notion of like, Can we get past just focus on glucose numbers and lots of coaching combined with technology. And then they're trying to help people with like a variety of health conditions while doing really high quality diabetes care. So we have this great talk about it. And I'm sorry, January AI was the fourth company and they are this amazing new machine learning based company out of the Stanford area that is actually doing a platform currently for type two diabetes, but I think they will be expanding. And that group also did a demo on day two, the first day again, was kind of this broad look at like what's going on in healthcare and diabetes care, that's when we had our inclusivity and diversity panel, we also had an interactive group problem solving exercise where we got people to we had a little It was kind of like choose your own medical adventure. It was this video of this, like a sort of mock patient and had her talk about her issues that she's facing. And then there were sort of three choices of what you could recommend for this woman to do as sort of her first line of defense with her diabetes care. And then we had people discuss that at their tables and decide and then vote on which one they would pick first. And then we showed what how they played out in real life, you know, and in order of what people chose as the first choice, so we'd have to do some really cool stuff to get put people kind of in the shoes of a health care provider but also in the shoes of the patient as in again, we have a mix of people at these events. So you've got you know, diabetes educators there and endocrinologists and even some like nutritionists and other people who are recommending stuff to patients and then you have patients who are you know, walking the walk and so it was kind of a cool way for them to discuss like, Okay, if you recommend this to this woman, like what are the pros and cons gonna be? How is this gonna play out? That was really fun. I we like to put people in the driver's seat and kind of see what they do. And a lot of this event is about the fact that you might have someone who is like, You know, really big has big following online as a patient advocate sitting next to you know, the CEO of some major pharma company, sitting next to you know, someone from FDA, and then all these DIY folks mixed in. And you know, we've got healthcare designers, and we've got educators and someone who might be the head of the you know, Joslin Diabetes Center. And so they get a chance to kind of interact and great networking, and I think really gives people a lot perspective and helps to break down barriers between these groups. You know, it really does. Stacey Simms 20:31 I was there two years ago, and it was the first time that I was in the same room as somebody from the FDA. And I remember thinking, This is amazing. And it turns out that part of it was my fault. Because as they explained to me, when I asked like, how come I haven't seen you before, you know, basically, you can come to us, and here's how, and I have put that information out, and I will again, but it was it was one of those situations that you know, I've been in the diabetes community for 12 years at that point. And it just hadn't occurred to me that I could have access to somebody like that. And this is a, you know, a public servant, really. And they explained how to do it. And you know, what the deal was, and it was funny to me, because I while I have a podcast, I'm a diabetes mom. Right? So it was a really nice, you know, lowering of by perceived at this as this boundary. And I'm sure that many other people feel that same way. It's It's nearly as you said, it's a lot of interesting people in the same room. Amy Tenderich 21:21 Yeah, thank you. And I mean, that's why I had this little panic attack when we, you know, when they close down all the Yeah, person events, like, how can we recreate that but, you know, as much as it gets old, being on online stuff all day long. It's amazing what you can accomplish, really. And you know, there are some, like I said, Great platforms that are being improved upon. So after we use this platform in June, we actually gave them feedback about what we would like to see. And they've made some progress, like, yes, it's really great. So you're asking about the non invasive cgms and whatnot. So CGM, obviously is this burgeoning area. So our opening speaker for D-Data this time on Friday, November 6, was Kevin Sayer, the CEO of Dexcom, talking about the future of CGM. And clearly, I mean, if anyone's qualified to do that, it's them. They've led the way. But there are dozens of kind of want to be you know, me to CGM companies coming out, they're doing all kinds of stuff from implantable to, you know, non invasive to semi invasive to just straight up Dexcom copies. We did a story diabetes might not long ago, something like 39 new companies working on cgms, you know, yeah, so there are many, many of them. Obviously, the non invasive or minimally invasive feature has been a dream for so many years. And there was this white paper written years ago called the deceitful Turkey, by an expert physician who had been researching it for so long, it's a very difficult thing to crack to be able to get something that is accurate and really usable. That doesn't penetrate the skin at all. But then you've got companies like bio link that are working on like they call minimally invasive with these like micro needles. So it's not drawing blood, but it's sort of like pokes into the skin very minimally. Mike Hoskins and I, who's my main man diabetes, mind, we were just talking about this the other day that it's probably time to do another story to sort of explain where we are with non invasive technology. Because Yeah, nobody's really done it yet successfully. But there are lots of companies that are just on the verge of having something really viable, which is exciting. Unknown Speaker 23:27 I'd read that story. Yes, definitely. Amy Tenderich 23:31 You know, especially now that you know, one of the big hot topics is the idea that CGM is going to become really, truly become standard of care and become more widespread use even among people who are not on intensive insulin regimen. So it's like what is going to help them be comfortable wearing it and get the most out of it. And we had another interactive session on Friday. And that was all about that it was a mock. We had people at their tables pretend that they were like a design group making a new CGM. And they had to pick their priorities for designing the CGM, and talk about why they did that. And were they trying to simplify data learnings for people? Were they trying to make it more motivational to use a CGM? Or were they trying to kind of like increase the consumer appeal and have it you know, have this kind of sexy look and feel. But I think a lot of people agree that especially for non insulin users, you know, the, the physical factor of the sensor is going to be a big deal breaker, right? But Unknown Speaker 24:26 it Yeah, Amy Tenderich 24:27 yeah, there's just so much going on. And you know, it feels like it never changes. But then again, if you look back, it's like, wow, things have really changed so much, even since we started doing this. And well, Stacey Simms 24:38 and that's what I want to ask you about too. We are not waiting. The phrase, as you obviously know was coined at the D-Data exchange. I was at the first one in 2013. Amy Tenderich 24:50 That's correct. So we started doing the Innovation Summit in 2011. So we had two of those events. And then the third year, it became clear that there were Are all these sort of people out there who were tinkering and you know, doing yourself the sort of technology savvy, it started with a group of D dads, basically diabetes dads who work in technology, who were like, Hey, we can do stuff with this. So and we decided that we would host a get together for those folks. And we were doing the summit at Stanford School of Medicine, that we just did it as a pre day to our summit, the day before, we got this sort of classroom, in this bio center directly across from the big hall, and just invited a bunch of people who were happened to be, you know, in or near the Bay Area, who would be able to come and we thought we'd have, you know, 25 people or something. And we were smashed in this classroom with like, 50 plus people, and there was all this excitement, and everybody was like, sharing their, what they're doing. And we kind of realized, like, wow, we're really onto something. And I want to give due credit to Howard Look, and Brandon Arbiter, from Tidepool, who really helped me I, you know, they were just coming on the scene then too. And so we were having all these conversations, and I said, Hey, you know, I really want to do this event, you guys want to help me, like get this group together? So we worked on it together. And what happened is the next day at the summit, I had asked Howard to get up and sort of summarize what happened at this D-Data exchange thing. And he kind of, you know, presented this term, which I believe the first person to utter it was Lane Desborough who is also a diabetes dad, as you know, and then worked at Medtronic for many years, and then was at Bigfoot for a while. But he basically said, what I'm hearing here is that we're not waiting. We're not waiting for the, you know, industry or for the FDA or for anyone to tell us it's okay to do this. We can do it. We're doing it. Yeah. And yeah. And then it's, you know, just as you know, absolutely blossom from there. So, Stacey Simms 26:38 as you look back at that, and it's been seven years, and it seems like as you had said earlier, it seems like things are moving so slowly and things would never change. And now Surely, there's a long way to go, right. It's not perfect. But now we have hybrid closed loops. On the commercial level, we have more DIY stuff, we have DIY stuff that might be going to be FDA soon, thanks to type pool when you look at the last seven years and your own diabetes management. And if you don't mind me asking, what are your thoughts about how far we've come since lane said it, and Howard wrote it on the whiteboard, you know, we are not waiting. It's pretty remarkable to look back at these seven years. Amy Tenderich 27:14 It's absolutely remarkable. And it's stuff that seemed like such a pipe dream at the time, like this whole idea of a closed loop system, it was like kind of eye roll or like, but now we have a very viable Do It Yourself homemade pancreas closed loop system, which I'm using, by the way, I've been looping now for quite a while. And it's a game changer, you know, and now the industry is coming out with them, it's a little slower. And obviously, on the industry side, you know, they have to, you know, there's so much risk averseness they need to be really careful. So they're, you know, have to make incremental changes. But we're getting there, I think soon. Again, you know, the idea of just getting a pump without a CGM, or even a smart insulin pan without something connected to it would just seem silly, because it's like, of course, you want to have the whole deal so that you can both continuously monitor your blood sugar and then also get help or have it automated to decide your dosing your ideal dosing amounts. So we've come a hugely long way. Insulin pens were done back then and talked about connecting them it took, you know, it's only very recently that the pen came out. And that we're really going to be able to actually use pens in a larger system, again, connect them to CGM and whatnot. And the apps obviously, becoming incredibly long way they were pre primitive back in the day. And, you know, I like to say the biggest problem was that so much of the stuff was being designed by people who don't, you know, not only don't have diabetes, but don't have any patient experience at all, it was being designed, it was just engineering driven, or clinically driven. And it wasn't livable, and it didn't solve real world problems for people, any devices or apps that just add more burden, it's not going to be continued to be used. And it makes absolutely no sense. You know, no, no Unknown Speaker 28:56 doubt, Stacey Simms 28:57 if you could look into your crystal ball for us just for the next year. Really, I know a lot of things were held up this year, because of COVID, things that we kind of expected in 2020 might be pushed to 2021. Or further, I won't hold you to it, we're not going to really make a bet on this. But I'd love to get your take on what you're looking forward to in 2021. Amy Tenderich 29:16 Oh, thank you so much. So we were privileged to be able to host the first ever closed loop system showcase at our fall event last year. So the end of 2019, we had six of the companies that are like getting closest to having or already have a system out. And it was just amazing. You know, they came and they talked about the details of their algorithm and you know, how they, what the targets are set out and whether the settings are customizable. And then we had patients there who had used the systems either in the real world or in studies. And I just think that there's going to be so much continued improvement on these systems. One very encouraging thing is that the studies are no longer being done in some kind of clinical environment or they are doing real world studies where they literally go out Follow people while they actually go out and do sports and eat food and do things that real people do, you know, so I think it's hugely important for kind of the form factor and just to understand how they can improve on the kind of day to day living experience with these systems. So I'm super excited about that. I do think also that insulin pens, again, gone from just being another sort of thing that you use to stick the insulin in your skin to an actual tool that can help people figure out their dosing and help people keep track of their, you know, their whole diabetes management, regime, and, you know, be connected to, you know, your stream of glucose data, which helps you understand what's happening. So, you know, all of this stuff is just getting so much more real world usable. And I think that's really going to be kind of the linchpin going forward. And it's already hard now for family for people who are newly diagnosed now, to even understand how good they have it. Compared to what it was, like, you know, even when I was diagnosed in 2003, I mean, it was a world away. I mean, right? Stacey Simms 31:06 What is the next event for DiabetesMine, I know, things are up in the air with COVID. Amy Tenderich 31:11 You know, so our, you know, traditional pattern has been that we do the D-Data exchange twice a year, so, so again, traditionally, pre COVID, it was in June, on the Friday before the big at a conference, wherever that happens to be. So we've done it in New Orleans, in San Diego, and Boston, Orlando, all the places, right. And then in fall, we would do this two day event, which was always in Northern California, it was at Stanford School of Medicine for years. It's also been at UCSF School of Medicine for the last couple years. And that was the called the Innovation Summit day, which was kind of this broader look. So it didn't only have to be technology, it could be anything that was innovative, whether that's a community program, or whether we were talking about innovations in like coverage, or community events, whatever, and just a variety of different things about improving care. And then the D-Data exchange day, which was always the deep dive into technology. And that event kind of has a pattern to it. At least we've always done it so that we have a featured DIY talk. So we try to always get some interesting speaker from the DIY community to come and talk about something that they're working on. That's cutting edge and new. And whether it be about the community itself for about a particular tool, that we traditionally had FDA come and speak because it's like, let's hear from them. They're so important in all of this. And then we have this lineup of demos that we always do kind of cutting edge stuff. And that's been everything from as you mentioned, new CGM systems to like apps that motivate teenagers to I mean, we've in the past, we've even had some I don't know things for diabetes complications, like socks that can monitor your feet for neuropathy. But right now, it's it's been also a lot of AI, you know, machine learning driven platforms that are trying to help people better calculate their insulin doses are better predict what's going to happen when they eat certain things, or do certain activities, different ways to be able to kind of glean meaning out of your data. Generally, we do June and then we do like early November, it kind of dawned on me that if if Ada does not go back in person, this coming June, which they may not, then we don't necessarily need to be tied to that date anymore. I mean, the the idea originally was, you know, everyone's in town. And it started that very first year that we did the bigger D-Data it was ADA was in San Francisco, which is my hometown. So we're like, oh, everyone's gonna be here. So we'll just do this kind of afternoon thing before and get everyone together. And that's worked really well. Because physically, people are, you know, in from all over the world. But right now, everything's kind of footloose. Because of COVID. Stacey Simms 33:44 well, thank you so much for coming on. And talking about all this and sharing these stories and for doing the conference and putting it all out there. And we'll link up as much as we can. If anybody missed it and wants to read all this stuff. It was really well covered on Twitter, I was following along the hashtag when I couldn't be there. And we'll get the word out. But he thank you so much for joining me. Amy Tenderich 34:02 My pleasure. Thank you so much. And thank you for being part of it. And I hope you will join us again sometime. Unknown Speaker 34:07 You got it. Unknown Speaker 34:13 You're listening to diabetes connections with Stacey Sims. Stacey Simms 34:19 More information about DiabetesMine the D-Data exchange. And that video we mentioned near the top of the interview the video about representation what people had to say, it's only five minutes, it's well worth your time. I'm gonna put it in the Facebook group and I will also link it up here in the show notes. Really interesting people definitely worth watching and worth possibly a follow if you're on Instagram or social media as well check them out. And I love talking to Amy because we always learn something new and see what new technology is coming. So of course more to come in the new year. Boy, I feel like there's a lot coming in 2021 that we've been waiting for. So I don't wanna get too off track or into the future but I'm excited and I'm Hoping to do an episode or two about a summary of what's coming. And I should also let you know I've also got interviews lined up with some of the people that are releasing really cool stuff coming up. We've got a lot to look forward to when it comes to technology in the new here, okay, tell me something good in just a moment. And it's an embarrassing personal story, but I will share because we're friends here, but first diabetes Connections is brought to you by Gvoke HypoPen, and you know, almost everyone who takes insulin has experienced a low blood sugar, and that can be scary. A very low blood sugar. It's really scary. And that's where Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon comm slash risk. Tell me something good. This week is about my family. We are celebrating a diaversary my son was diagnosed with type one, as I always say right before he turned two back in 2006. Which means as hard as it is for me to believe we are marking 14 years and that kid is going to be 16 pretty soon. So the story I want to tell you here for Tell me something good. And if you're a new listener, he is doing great. Maybe that's the good news story I should start off with he is happy he is healthy is independent. He drives me bonkers. I want him to do more in his care. I want him to change his sites on the spot every three days and pre bowl is 15 minutes. Every time he eats. He doesn't do that. But you know what he does so much. He's super responsible, as far as I'm concerned. And he is almost 16. So for where he is, and what I was told could happen during the teen years. I really keep my fingers crossed, I knock wood I'll swing a dead chicken if you make me. I mean, I really feel like we have a lot to be thankful for. So having said that, this is a story about how we did everything wrong. 14 years ago, let me set the table. When Benny was diagnosed, I have a daughter. She is three years older than him. So she was just five. their birthdays fall in such a way that she just turned five he was not yet to. And my brother in law. My husband's brother was living with us. It was a temporary situation. He was with us I want to say for about, I don't know, a year, year and a half. He was between jobs. We had two little kids. We both worked full time. He asked you know Hey, can I come stay with you for a little bit while I get things settled? And we said please come down and be like a nanny. We can't have you here fast enough. And it was amazing situation. It really was uncle David was just a godsend, great guy and, you know, left us and went back to a full time job and a great life and relationship in a situation where he now lives too far away. If you're listening, David, he's up in Pennsylvania. But he was there when Benny was diagnosed, which made our lives kind of easier. He had another caretaker in the house when Slade and I took Benny right to the hospital on that Saturday morning. That first weekend in December December 2 I always have to look at the date December 2 2006. David stayed home with Lea until we were ready to trade off and have her come visit and that kind of stuff. And we all learned how to do things together. So we came home Three days later, we tried to go back with our lives. Haha, you know, we were all kind of in the thick of things. And that Saturday night, the following week, Slade and I had tickets to go see a show, you know, I'm a big Broadway fan, love that kind of stuff. And David said you should go I've got this. I know just as much as you guys do. And he really did. I'll watch the kids go and your phone call away. So the theater in Charlotte, you know, we have one of these regional theaters where the Broadway shows come traveling through. It's about 30 minutes from us. Yeah, you really put the pedal to the metal 25 but 30 to 35 minutes. So we thought okay, this is good. We're all our doctor says go on with your lives. We're going to go on with our lives. David's got this. The show was Spamalot. By the way. It was you know, very funny musical comedy. And we decided to go and enjoy ourselves. We got dressed up. We went not 20 minutes into the show, maybe 30 minutes of the show Slade's phone starts buzzing, and he gets up and leaves if you are familiar with the show, this is just after he is not dead yet. And the lady of the lakes. So I'm sitting there watching this very funny show, being amused being entertained. But my husband is no longer sitting next to me and I know something's up right. If he had come right back, it might have been something easy just to question, but he's not back. I think I made it about halfway through the song that goes like this. I remember seeing that which is the song that really just goes on and on. When that ended, because I wasn't gonna run out of the theater when someone was singing people applauded and I booked it out into the lobby. And Slade was on the phone, pacing and talking and pacing and talking. Here's what had happened. David had given Benny an injection for dinner or snack, I don't even know whatever it was it gave me an injection. And remember, at this time, we're using a syringe and we're drawing up teeny, teeny tiny doses. He's getting like point two, five, maybe for 20 carbs, I think I mean, who remembers these doses, but they were minuscule. They didn't have half unit pens at the time. And they certainly didn't have quarter unit syringes. I don't think they have that. Anything like that now. So unless you're using diluted insulin, which nobody had mentioned to me during his whole toddlerhood, you know, you're really guessing at the dosage, and you're trying to eyeball these teeny, tiny poufs and wisps of insulin. So David had tried to draw up like half a unit, I don't remember the exact dose he was supposed to give was, but he gave him two full units, which was bigger than anything we had given before. It makes me laugh now because to like, it's like a speck of dust for him now, but two units when you Wait, 27 pounds is a huge deal. So what David and Slade had already done while I was sitting there watching people singing, they had already called the endocrinologist. And they had actually already gotten a call back. And that's what the phone call and the pacing, that's what was going on. When I had walked out, he was on the phone with the doctor. And of course, they advised check the blood sugar, give more carbs if needed. You know, nobody was panicking. So we didn't panic. His blood sugar was fine. David had checked it before he called he checked it after the endocrinologist called back, he was fine. It gets a little weird, because the dose had been given Well, before the phone call. It was one of those situations where David did it. And then A while later thought, did I really do that? He absolutely swears that he gave the kid two units. But two hours later, his blood sugar hadn't dropped. So my suspicion at the time was you didn't give him two units, you probably drew it up and just misread the syringe, which was very easy to do at the time, especially when you're distracted by a toddler and a five year old or the child didn't go all the way in, or something really weird happened because his blood sugar stayed steady. You know, we were checking with a meter. We did have a dexcom at the time. But he was checking him every half an hour. We left the theater, we went home. We didn't want him to have to handle this by himself. And how are we going to enjoy Spamalot, right? Stacey Simms 41:54 We're worried about Benny. We're now home, probably close to three hours after the dose is given. His blood sugar was steady. We called the endocrinologist back and they said look, it's three hours pass the dose. If he hasn't dropped, he's not going to drop you guys are okay. So we being the terrible parents that we are looked at each other and said, you know, our friend was having a holiday party that we couldn't go to because we had tickets to Spamalot. David, do you mind if we go to the party now? I swear we did. We left we went to my friend's party. And my friend is only 10, 15 minutes away from my house. And it was what 10 o'clock at night already. So we only went out for about an hour and a half. But yes, I left my sleeping baby and he never woke up. And he never even woke up with all those pokes all those finger sticks to check his blood sugar, which I'm sure David did 10 more times before midnight, he slept through the whole thing. We were all worried but not worried enough not to go to that party. Ah, I am the worst. We have always been the worst. But you know what he was safe. And our endocrinologist gave us the correct information told us what to look for helped us through it. And there was no sense as we saw it, not going to the party. So I know I'm a terrible parent. That's why I always say I'm the world's worst diabetes Mom, I still have not seen Spamalot all the way through. So maybe when it comes back through shark, I'll go back and make it through the first half of the first act. Oh my goodness. And hey, anybody dealing with a toddler or baby with type one, and those teeny tiny doses, I salute you. It's not easy. Getting an insulin pump makes it a little bit easier. But anything under the age of five is a circus of you know, type one is never easy no matter what age you are. But we're heading into 16 year old with it. And that means driving, which is an adventure for another time. Before I let you go quick reminder friends for life is this weekend, the virtual conference. And if you were able to attend in July, you know that did an amazing job. If you were there, the one thing I will say that surprised me in a very good way was how much just schmoozing. We were able to do. They had specific zoom rooms for different ages, you know, parents and teens and young adults with type one, it was great. And I really wish I had put aside more time in July to attend the conference. Because I didn't really understand how much just hanging out and socializing we'd be able to do. So I'm putting more time aside to attend this one. And I hope you can check it out as well again, link in the show notes. Hey, in the weeks to come, we're gonna have a couple of more episodes in December probably take one off the week of Christmas, even though I celebrate Hanukkah, but you know, we go with the flow. And I also want to just point out that this time of year, there are often a lot of approvals. It just seems like that last week in December, there's usually a lot of news. So stay tuned. I know a lot of delays happened because of COVID. So, you know, I'm not even sure what's been submitted to the FDA that was planned for this year. A lot of delays that way, but we will definitely be talking about it. Make sure you follow on social media for the latest and greatest. And thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much as you listen and if you've listened this long, I really appreciate it got a little chatty this week with that story about Benny and Uncle Dave. But But I appreciate you listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself. Unknown Speaker 45:10 Diabetes Connections is a production of Stacey Simms media, all rights reserved. All wrongs avenged.
Are you a woman of color, looking for ways to connect to other women of color with diabetes? Listen into Cherise's personal experience and connect with her or other women of color navigating their way through everyday diabetes challenges!Connect with WOCdiabetesInstagram: @WOCdiabetesTwitter: @WOCdiabetesFacebook @WOCdiabetesLooking for one-on-one diabetes support? Want to learn how to manage diabetes without fixating on weight? Need a "one-and-done" check in to see how your diabetes management plan is working? Check out my consultation options!Make sure you subscribe to this podcast AND Type2andYou. As a big thank you, I'll send you a FREE copy of my 5-Strategy Guide for Building Your Diabetes Confidence!Every person with diabetes is unique and deserves care tailored to them by a medical team directly involved in their diabetes care. For that reason, this podcast & Type2andYou content is for informational purposes only and not intended as medical advice. You can read my complete disclaimer on Type2andYou.org.
Cherise Shockley's debut to podcasting solo.
It's our annual game show edition! Taped on location at the Children with Diabetes, Friends for Life Conference, we have a lot of fun with in-studio contestants and prominent panelists. Join the Diabetes Connections Facebook Group! Our panelists this year are: Dr. Stephen Ponder, founder of Sugar Surfing & a renown pediatric endocrinologist who's lived with type 1 for more than 50 years. Howard Look, founder of Tidepool and the father of a college-aged child with diabetes and Cherise Shockley, founder of DSMA (Diabetes Social Media Advocacy), Blue Fridays, WOCDiabetes and who lives with LADA. Sign up for our newsletter here In our Community Connection this week.. another Caravan to Canada but this one gets the attention of a top tier US presidential candidate And in Tell Me Something Good: A birthday, an international trip and much more! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Dear DMoms is back, answering your questions about when it's time for T1D kids to be more independent, worries about camp and handling judgmental friends. In this monthly segment, Stacey and Moira McCarthy share their experiences to help you through diabetes parenting. Join the Diabetes Connections Facebook Group Moira shares what her medical crisis has taught her about diabetes. Plus, a Caravan to Canada – going across the border to get cheaper insulin. Activists Lija Greenseid and Quinn Nystrom give us a report on their way back home to the US. More info on the Caravan here Newsweek article here Previous interview with Lija about traveling the world with T1D Previous interview with Quinn And in Tell Me Something Good, a graduation that is well earned and a long time coming. A diabetes social media advocate who got her cap and gown. Congratulations to DSMA founder Cherise Shockley! ---- 2:00 Stacey Welcome 5:20 "Dear D-Moms" Stacey & Moira answer your questions 51:30 Community Connection: Caravan to Canada 1:07 Tell Me Something Good: Congratulations to DSMA founder Cherise Shockley on her college graduation! ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
This week, Cherise Shockley returns to the podcast to discuss home office layouts, pursuing a degree in social media (only it's not called social media), the diabetes technology space race, and how we might address the lack of representation of women of color in the diabetes community. Follow Cherise on Twitter @SweeterCherise. Follow #dsma on Twitter and @WOCdiabetes on Instagram. Run Time - 41:50 Send your feedback to feedback@justtalkingpodcast.com.
Previously on Just Talking, Cherise Shockley and I planned to revisit the Insulin Access Workshop hosted by Eli Lilly and discuss the data that fuels much of the conversation around insulin pricing. Then, Eli Lilly raised the price of their insulin 7.8%, a month after hosting a conversation with diabetes advocates about insulin pricing. In the aftermath of these events, Cherise participates in some therapeutic processing of what happened, and what diabetes advocates can do moving forward. Follow Cherise on Twitter @SweeterCherise and check out the #DSMA (Diabetes Social Media Advocacy) TweetChat @DiabetesSocMed. Here's some reading material if you want to catch up on the reaction to Eli Lilly's price increase: The price increase was first reported on CNBC. Here's Mike Lawson's response. And here's Meri Schuhmacher-Jackson's emotional response. Here's DiabetesMine's Mike Hoskins following up with Eli Lilly. The National Diabetes Volunteer Leadership Council has a lot of data to share on the subject. Run Time - 56:45 Send your feedback to feedback@justtalkingpodcast.com.
Cherise Shockley returns to the podcast to talk about the recent Insulin Access Summit hosted by Eli Lilly. As complex as this conversation can get, we do our best to keep our focus on the intent of the meeting and what diabetes advocates can do to address the cost of insulin besides talk to their elected officials. We'll be continuing this conversation next week with some additional data points and opportunities for people interested in this topic. Follow Cherise on Twitter @SweeterCherise and check out the #DSMA (Diabetes Social Media Advocacy) TweetChat @DiabetesSocMed. Run Time - 28:25 Send your feedback to feedback@justtalkingpodcast.com.
Cherise Shockley joins me for a conversation about inhalable insulin, the joys of running, gamification of health, and the continuing adventures of the Diabetes Community Advocacy Foundation. Follow Cherise on Twitter @SweeterCherise and diabetescaf.org. Run Time - 56:01 Send your feedback to feedback@justtalkingpodcast.com.
Cherise Shockley joins me this week to talk about the upcoming year for the Diabetes Community Advocacy Foundation, reflect on the past year of #dsma Twitter chats, share her strategies for a work-life balance, and her love of economics (both micro and macro). Enjoy. Follow Cherise on Twitter @SweeterCherise and diabetescaf.org Run Time - 57:09 Send your feedback to feedback@justtalkingpodcast.com.
I spend the next hour catching up with Cherise Shockley, founder of the Diabetes Community Advocacy Foundation. We discuss how her life has changed after getting a dog, the unexpected value in having a second grader take a personal finance class, the calculated growth of the Diabetes Community Advocacy Foundation (DCAF), and knowing when to establish healthy boundaries. Enjoy! You can learn more about DCAF diabetescaf.org and be sure to follow Cherise on Twitter @SweeterCherise. Run Time - 57:52 Send your feedback to feedback@justtalkingpodcast.com.
This past weekend (September 28-30) I attended Medicine X at Stanford University as a recipient of one of their ePatient Scholarships. The conferenced featured a variety of speakers and topics including technology startups, ePatient perspectives, and innovation opportunities aimed to address the wide range of healthcare issues facing the world. Kim Vlasnik and Cherise Shockley were also award ePatient Scholarships and they were gracious enough to hop on the podcast to reflect on the experience. Enjoy. For more information about Medicine X, go to medicinex.stanford.edu. Follow Kim on Twitter at @txtngmypancreas and textingmypancreas.com. Follow Cherise on Twitter at @SweeterCherise and diabetessocmed.com. Run Time - 42:07 Send your feedback to feedback@justtalkingpodcast.com.