Podcasts about renza scibilia

In July 2024, MTPConnect was selected to deliver a new $28.5 million investment for Drugs and Devices, which builds on the legacy of the inaugural TTRA program.The objective of TTRA Drugs and Devices is to accelerate development and commercialisation of promising drugs and medical devices into products that can reduce the burden of cardiovascular disease and complications of diabetes for patients, carers, families and community.TTRA Drugs and Devices is now calling for Expressions of Interest (EOI), to fund eligible Australian start-ups, spin-outs and SMEs to develop innovative preventative, diagnostic, therapeutic and/or disease management drugs and devices for cardiovascular disease and the complications of diabetes (type 1 and type 2). Guidelines & application information can be found on the TTRA webpage. Submissions close at 16:00 AEDT on Monday 4 November 2024.Hear from MTPConnect's TTRA Team Lauren Kelly, Dr Mana Liao and Dr Erin McAllum as well as experts Kenny Lean from Roche Diagnostics Australia, Dr Perdita Cheshire from CSL and Renza Scibilia from Breakthrough T1D.See the TTRA Drugs and Devices webpage for more information.

When it comes to diabetes advocates, few are held in such regard as Renza Scibilia. And rightly so, as for more than two decades she has travelled the world to ensure the voices of people with diabetes are not only acknowledged, but listened to and understood by everyone from world-renowned healthcare professionals to pharmaceutical bosses. Diagnosed in 1998, Renza's activism started out through the Diabetonic blog, published from her desk at home in Melbourne, Australia. But such is her determination and motivation to create meaningful change, she is now Director of Community Building & Communications at Breakthrough T1D (formerly JDRF), Head of Advocacy at #dedoc°, and in her spare time (when she's not baking or on a plane), she runs a health consultancy. As much as Renza works hard to makes sure she has a seat at the table, she works even harder to ensure that there are seats for the rest of us too, shaping outcomes for everyone who has been forced through lived experience to cruelly understand what it really means to live with type 1 diabetes.  'When insulin has been around for 100 years, lack of access should not be happening,' she told me. 'It's perfectly ok to feel overwhelmed by the personal burden of type 1 diabetes and what we are living with, but I do also feel the weight of what type 1 diabetes is on a bigger scale. Sometimes I think it's ok to feel hopeless because of that, because in many ways it's what drives me.' This generous and heartfelt conversation is such a treat, and a reminder of the power we collectively have for change when the right people are shaping the conversation. CONNECT WITH RENZA:Take a look at Renza's blog, Diabetogenic. Follow Renza on X.JOIN THE TYPE 1 ON 1 COMMUNITYWe've got an Instagram account! Come and say hi @studiotype1on1. SPONSOR MESSAGE: Thanks to my episode sponsors Dexcom. Pioneer and leader in Real-Time continuous glucose monitors, Dexcom's goal is to simplify and improve diabetes management for every possible person with diabetes. They have a choice of systems, so you can find the right one for your lifestyle at https://www.dexcom.com/

Today, Pam speaks with Renza Scibilia, a renowned diabetes advocate. Renza is a leader who has been using her voice to make significant strides in addressing stigma and improving the language used when discussing diabetes. Don't miss this discussion and chance to learn more from one of the world's leading diabetes advocates as we explore The Importance of Diabetes Advocacy, Addressing Stigma and The Language We Use. Renza Scibilia has lived with type 1 diabetes since 1998 and has worked in diabetes organizations for 22 years. She is the Director of Community Building and Communications in the Global Team at JDRF International. She is also the Global Head of Advocacy for #dedoc°, a European-based organization providing opportunities for diabetes advocates from across the world to become part of a peer network and attend professional conferences under the banner #NothingAboutUsWithoutUs. She is a consultant, facilitator, and media spokesperson who is frequently invited to speak about peer support, diabetes technology, communication in healthcare, and how to reduce diabetes-related stigma. Renza is well-known in the diabetes community and is the author of Diabetogenic, and a regular contributor to many health publications. Since August 2017, Renza has been wearing a DIY automated insulin delivery device and she is part of the #WeAreNotWaiting movement. If you're enjoying this podcast, we'd love to hear from you! Your feedback helps us create content that serves you better. So, if you have a moment, please head over to Apple Podcasts—or wherever you listen to your podcasts—and give us a rating and review. Five-star ratings really help us reach more listeners. You can also Join the Diapoint mailing list for exclusive insights, offers and diabetes wisdom. The Diapoint Family Weekend taking place on 4-5 November 2023 in Dubai! Just imagine—a space where you and your child's diabetes journey is not just understood but it is celebrated! The weekend is packed with activities for children and parents; from team building to fun games and other activities. Registration is now open, and space is limited, so don't miss the opportunity to reserve your spot. You can find out more information at www.diapointshop.com or just drop me an email at info@diapointme.com Don't miss this chance to connect with others. Don't forget to hit that 'Subscribe' button so you never miss an episode. And, if any of our episodes or guests resonate with you, share them on social media or forward them to friends and family who would benefit from our community's collective wisdom. Visit the D-Shop where we offer beautiful, practical diabetes supplies and lifestyle accessories. The Ultimate T1D Game Plan: A game-changing home study program for parents of school-aged children with Type 1 Diabetes. Diabetes resources. Looking for health support? Set up a FREE Health Plan call today! Book a time to meet with Pam at this link. Watch our podcast episodes and more on our YouTube Channel! @DiapointTV Connect with Diapoint @diapointme: Instagram | Facebook | Twitter | Pinterest Connect with Diapoint Arabia - in Arabic!: Instagram | Facebook | DiapointArabia.com Find episodes, show notes and guest info from all Dia-Logue episodes on the Diapoint website. Would you like to sponsor our podcast? Get in touch: info@diapointme.com Diapoint is the place for people touched by diabetes. For more information and full details of our work, visit diapointme.com . Subscribe to the podcast so you get notifications for all our episodes, and please share it on social media or with anyone you think could benefit from this free content. Thank you for listening!  

In this episode, hosts are joined by Marissa Town, BSN, RN, and Renza Scibilia for a discussion centered around the role of the patient voice in diabetes management while on site at ATTD 2023.

Let's dive in: do we need to be sensitive about diabetes and language? There's a growing movement toward changing the language of diabetes so that it can be more empowering for people living with diabetes. It's time to move away from calling diabetes a disease, people with diabetes patients and those living with diabetes diabetics. But why is it so important? We ask Australian diabetes advocate and language champion Renza Scibilia to talk us through it. As a person with diabetes, you can call yourself whatever you want - it's not about us. We can use whatever language we want. But when it comes to the media, government and healthcare providers, there are specific words and imagery that we need to change. This is a very entertaining, fast-paced conversation about why language is important. Renza Scibilia's blog: Diabetogenic - real life with diabetes. · Our Language Matters: Diabetes Australia position paper on language. · South Africans with Diabetes Facebook community. · Abbott FreeStyle Libre CGM · Sweet Life Diabetic South Africans Website · Connect with Sweet Life on LinkedIn · Solid Gold Podcasts #BeHeard · Follow Diabetic South Africans on Facebook · Twitter · Instagram

The official podcast from Diabetes Victoria, hosted by Jack Fitzpatrick Ahead of Saturday's Federal Election, all major parties have promised to provide subsidised access to continuous glucose monitoring and flash glucose monitoring technology for all people living with type 1 diabetes.  In this episode, host Jack Fitzpatrick unpacks this election commitment with Renza Scibilia from Diabetes Australia.  Renza is a well-known diabetes and health advocate, who has a worked behind the scenes for many years to make this technology more accessible.  Renza also explains what other election asks Diabetes Australia is wanting the newly elected government to tackle next: diabetesaustralia.com.au/research-advocacy/advocacy/federal-election-platform-2022 Find us online at http://diabetesvic.org.au Subscribe in iTunes - https://apple.co/2Dj29B6 Subscribe on Spotify - https://spoti.fi/37F7ela Subscribe with iHeart Radio - https://ihr.fm/37nc8mV Contact us at podcasts@diabetesvic.org.au -- Post-production by Steve Visscher | Southern Skies Media for Howdy Partners Media | howdypartnersmedia.com.au/podcasts on behalf of Diabetes Victoria © 2022   See omnystudio.com/listener for privacy information.

It's “In the News…” Got a few minutes? Get caught up! Our top stories this week include a new company called Luna Diabetes founded by some heavy-hitters in our community, a new #T1D telehealth study for underserved kids, improved life expectancy for people with type 2 and a look at 420 with diabetes. Join us LIVE every Wednesday at 4:30pm ET 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! ----- Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about AFREZZA* *Click here to learn more about OMNIPOD* *Click here to learn more about DEXCOM* Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast. XX The news is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes. Winner of best new non-fiction at the American Book Fest and named a Book Authority best parenting book. Available in paperback, eBook or audio book at amazon. XX Our top story is a very interesting LinkedIn post about a new company and product.. Luna Diabetes aims to fill in a big gap – overnight automated control for people who use smart insulin pens. They're calling it A-I – automated injections, a way to combine the convenience of insulin pens with the clinical outcomes of automated insulin delivery – like Control IQ or Looping. Some heavy hitters here – the founders are John Show-lund Sjolund – founder of Timesulin, John Brilliant a co-founder of BigFoot biomedical and Sean Saint, founder of Companion Medical who made the InPen automated pen system. The release shows a little device but no real information yet. Is it an automated basal delivery system for overnights only? pivotal trial to start by the end of this year We'll keep you posted.. https://www.lunadiabetes.com/ XX A look at pediatrics in under-served communities shows most children are not meeting A1C goals. A new grant from the Helmsley Charitiable Trust will focus on expanding access through remote care. Many providers lack the money to set remote care up and use it effectively – telehealth systems and things like that. A large pediatric endo group in Buffalo, NY will work with Cecelia Health, a virtual first health care provider. They'll work with about a thousand patients to explore how improving access to remote support and the internet to better manage chronic conditions will improve outcomes. This is along with existing diabetes technology like pumps and CGMs. https://www.benzinga.com/pressreleases/22/04/n26682238/improving-outcomes-for-children-and-adolescents-living-with-type-1-diabetes-is-the-goal-of-a-colla XX Big news for people with diabetes in Australia. The government has committed to subsidized access to continuous glucose monitoring and flash glucose monitoring technology for all people living with type 1 diabetes. Right now, people under 21 are already eligible as as women who are actively planning a pregnancy or are pregnancy. This agreement will make everyone eligible for just over 30-dollars a month. Right now it costs over 300-dollars a month. I'm going to link up info from the incredible Diabetes Australia advocate Renza Scibilia who's been on the show before and who's been working on this for more than ten years. Congrats Renza and all who will benefit. https://www.diabetesaustralia.com.au/mediarelease/diabetes-australia-welcomes-bipartisan-commitment-to-cgmforall/ https://diabetogenic.blog/2022/04/17/oh-happy-day/ XX Not a big surprise but important information about improving life expectancy in people with type 2. New study shows reducing A1C, blood pressure, cholesterol and BMI makes a big difference. This was a University of Florida Gainesville study.. biggest improvement in all of these was reducing A1C from the highest in the study – about 9.9 - to the lowest about - 7.7 - added almost 4 years of life expectancy. These researchers say it's very motivating to patients and clinicians to see these gains and it may help them choose treatment goals. https://medicalxpress.com/news/2022-04-treatment-goals-diabetes-life.html XX We've talked about One Drop before.. more than a meter, they now call themselves a digital coaching company. And a new evaluation from an independent, third-party found that One Drop's support program effectively improves the health of people living with prediabetes, diabetes, and high blood pressure. The program could also cut down on annual healthcare costs. This is from the independent Validation Institute, dedicated to providing unbiased, data-driven insights on health care solutions. The Validation Institute financially guarantees the program's effectiveness. This means that people who follow the program properly but do not improve their blood pressure or A1C can file a claim with Validation Institute for up to $25,000. https://diatribe.org/one-drop-results-backed-by-independent-review XX Okay this newscast is going live on April 20th.. or 4-20.. There are a lot of questions about whether marijuana which is now legal in a lot of the US is okay to use if you have diabetes. I'm going to link up some information for you in the show notes.. But most of the information focuses on the slightly altered state weed can put you in.. for many that means being more relaxed but for some it may interfere with diabetes management in the moment. There's nothing specifically good or bad about marijuana that I could find for people with diabetes. However there is a warning for any pregnant woman -children who were exposed to cannabis in utero may be at risk for obesity and high blood sugar later in life. https://beyondtype2.org/marijuana-and-type-2-diabetes/ XX On this week's long format episode, Dr Mark Heyman is a diabetes psychologist who lives with type 1. He has great advice for the most under-treated part of diabetes, the mental health aspect of it all. Next week you'll hear from Civica RX – this is the company pledging to put out insulin without making a profit. We'll hear why they think this will work and how soon it'll be available for purchase. Listen wherever you get your podcasts That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

In this episode we talk to Renza Scibilia. A diabetes advocate, international speaker and media spokesperson for most of her life. We chat about how Health organisation's navigate putting out information on how to co-exist with COVID. How can patients navigate the maze of messaging and overcome the uncertainty that is leading, in some cases, to a lack of confidence in vaccination and the health system? MatterofVax is brought to you by ghlf.org.auSee omnystudio.com/listener for privacy information.

The official podcast from Diabetes Victoria, hosted by Jack Fitzpatrick Renza Scibilia has worked for Diabetes Victoria and Diabetes Australia for over 8 years. She is a diabetes and health advocate, peer support and social media consultant, health writer, media spokesperson, workshop presenter and facilitator. Renza is a blogger - she is the owner, editor, and writer of Diabetogenic. Find Renza's Diabetogenic blog at diabetogenic.wordpress.com/ Find us online at http://diabetesvic.org.au Subscribe in iTunes - https://apple.co/2Dj29B6 Subscribe on Spotify - https://spoti.fi/37F7ela Subscribe with iHeart Radio - https://ihr.fm/37nc8mV Contact us at podcasts@diabetesvic.org.au -- Post-production by Steve Visscher | Southern Skies Media for Howdy Partners Media © 2021 - Diabetes Victoria See omnystudio.com/listener for privacy information.

I sat down with diabetes activists, writer, and my good friend, Renza Scibilia to discuss life, social media, the lack of diversity, equity, and inclusion in the diabetes space. Listen to this episode to find out what my conversation partner could not keep to herself. Follow Renza on Twitter: @RenzaS Thank you for listening to Don't Keep It To Yourself. If you enjoyed this episode, subscribe, leave a review and follow us on Instagram.

This week on MamaBetes, Ash and Rachel are joined once again by Renza Scibilia to talk about advocacy in diabetes and pregnancy care. The ladies cover what they think advocacy means, the range of contribution you can make to advocating for yourself and others, and how you can advocate both pre-pregnancy and during pregnancy for both yourself and other women with Type 1 Diabetes.Make sure you subscribe to us wherever you listen to your podcast so you never miss an episode, and leave us a review so that others can find us too. Please jump over and find us on Facebook, Instagram & Twitter. The MamaBetes team love connecting with you on these platforms! To reach out, please email us at mamabetes.podcast@gmail.com.If during this podcast series you feel you need to reach out for additional support, please contact your usual treating team, PANDA's National Perinatal Anxiety & Depression Helpline on 1300 726 306 or LifeLine on 13 11 14 outside of PANDAs operating hours.If you would like support in advocating for yourself, your diabetes or your pregnancy care, please speak with your local diabetes body for advice or support. You can contact them on the details below:Diabetes QLD Helpline: 1800 177 055 or +61 7 3506 0999 (outside Australia)Diabetes NSW & ACT Helpline: 1300 342 238 or +61 2 9552 9942 (outside Australia)Diabetes VIC Helpline: 1300 437 386Diabetes TAS Helpline: +61 3 6215 9000Diabetes SA Helpline: 1300 198 204Diabetes WA Helpline: 1300 001 880Diabetes NT Helpline:  08 8927 8488 (Darwin) or 08 8952 8000 (Alice Springs)

It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares! Huge thanks to our panelists: Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program Check out Stacey's new 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 Transcription In The Works

This week on Mamabetes hosts Ashleigh, Carleigh and Rachel are joined again by guest Renza Scibilia, National Program Manager for Type 1 Diabetes at Diabetes Australia, who chats with us about the reactions other people may have when learning of your pregnancy with diabetes.We also talk about managing changes in relationships with our loved ones during pregnancy.****Renza has lived with type 1 diabetes since 1998 and is well-known in the diabetes online community, and is well-versed in social media, its influence on people with chronic health conditions and application in peer support.She is the author of one of Australia's most widely-read patient blogs, Diabetogenic, (www.diabetogenic.wordpress.com) and has written for many online and print publications.Renza has extensive experience as a facilitator, presenter and media spokesperson having presented at conferences in locally and around the world. She speaks about topics including the importance of peer support in chronic health management and why language matters in diabetes and healthcare.Jump over and find us on Facebook, Instagram & Twitter.

This week on Mamabetes hosts Ashleigh, Carleigh and Rachel are joined by special guest Renza Scibilia, National Program Manager for Type 1 Diabetes at Diabetes Australia, who chats with us about stigma in diabetes, and how you may come across it in your pregnancy.Renza has lived with type 1 diabetes since 1998 and is well-known in the diabetes online community, and is well-versed in social media, its influence on people with chronic health conditions and application in peer support.She is the author of one of Australia's most widely-read patient blogs, Diabetogenic, (www.diabetogenic.wordpress.com) and has written for many online and print publications.Renza has extensive experience as a facilitator, presenter and media spokesperson having presented at conferences in locally and around the world. She speaks about topics including the importance of peer support in chronic health management and why language matters in diabetes and healthcare.Make sure you subscribe to us wherever you listen to your podcast so you never miss an episode, and leave us a review so that others can find us too. Please jump over and find us on Facebook, Instagram & Twitter. The MamaBetes team love connecting with you on these platforms! To reach out, please email us at mamabetes.podcast@gmail.com.If during this podcast series you feel you need to reach out for additional support, please contact your usual treating team, PANDA's National Perinatal Anxiety & Depression Helpline on 1300 726 306 or LifeLine on 13 11 14 outside of PANDAs operating hours.If you have experienced stigma and would like to speak with your local diabetes body for advice or support, you can contact them on the details below:Diabetes QLD Helpline: 1800 177 055 or +61 7 3506 0999 (outside Australia)Diabetes NSW & ACT Helpline: 1300 342 238 or +61 2 9552 9942 (outside Australia)Diabetes VIC Helpline: 1300 437 386Diabetes TAS Helpline: +61 3 6215 9000Diabetes SA Helpline: 1300 198 204Diabetes WA Helpline: 1300 001 880Diabetes NT Helpline:  08 8927 8488 (Darwin) or 08 8952 8000 (Alice Springs)Click here for the Diabetes Australia Position Statement: A new Language for Diabetes

Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about? Full transcript below Check out Stacey's new 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 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com.   Announcer  0:15 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays. I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right? There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference. Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em  straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened. There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”  And he posted the pictures that he had just talked about now. Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.” Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?” Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.” And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived” I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back. And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.” Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.” Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.” And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician. Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating. Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more. What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.” And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down. And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore. So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive? If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here? Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better. And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult. And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results. So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead. So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a  picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.” Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call. I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.” What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change” I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do. I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt. Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it. What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going. Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week.   Unknown Speaker  15:57 Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged   Transcribed by https://otter.ai

It's hard to believe, but a natural disaster was the spark to bring a popular diabetes device to the US. A Frio is a handy little way to keep your insulin cool. Dan Katzki was diagnosed with type 1 as an adult an in 1989 – during the San Francisco earth quake – he lost power.  Join the Diabetes Connections Facebook Group!  Not wanting to go through that anxiety again, Dan and his wife Lisa found the Frio product and brought it to the US. How it was invented is another great story. Our Community Connection is all about a virtual conference coming up in May. Find out about the Diabetes Empowerment Summit - the conference you can attend in your pajamas. And Tell Me Something Good includes a huge milestone for a diabetes advocate we’ve spoke to before. 1000 blog posts for Renza Scibilia who's also marking her 21st year with diabetes. ----- 1:50 Welcome: Stacey shares how the Avengers movie coming out this weeks means a lot to her family. In fact, Marvel has even helped with diabetes.  7:00 Interview with Dan and Lisa Katzki 39:00 Community Connection: The Diabetes Empowerment Summit 42:00 Tell Me Something Good: Renza Scibilia marks 21 years with type 1 and 1000 blog posts! Plus, Julia shares how she's (in her words) "graduated from the breast surgeon" and what that means to her. 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    

Renza Scibilia and Chris Aldred have diabetes, and their introduction to the idea of complications arising from the condition were terrifying. Because of this early experience, and Chris's later development of complications, they have campaigned to make doctors really think about the way in which they talk about complications with patients. Challenging the use of "non-compliant" and other stigmatising language. Chris has also documented his experience of developing an ulcer, and having it successfully treated, on social media, to open up the conversation and make us all #talkaboutcomplications. Chris Aldred is @grumpy_pumper on twitter, and blogs at http://www.the-grumpy-pumper.com. Renza Scibilia is @RenzaS on twitter and blogs at https://diabetogenic.wordpress.com/

One of the surprising things I've found out about myself while interviewing people for Diabetes By The Numbers is that I'm one of the worst pronouncers of names I've ever met. That's horrible, especially when I have a guest as special as Renza Scibilia. Renza is a diabetes superhero worldwide, with her blog, her work for a large diabetes organization in Australia, and her presence at the forefront of the most important issues facing all of us. After Renza gets me straightened out on the correct pronunciation of her last name, we talk about the upcoming ATTD conference in Berlin, the importance of #LanguageMatters, and how critical the Spare a Rose campaign is. Which is timely, because this episode of Diabetes By The Numbers is part of Diabetes Podcast Week, February 10 through 16. All of the podcasters and video bloggers are throwing their efforts this week behind the Spare a Rose, Save a Child campaign through the International Diabetes Federation's Life for a Child program. As I've mentioned before, the cost of one rose (about $5 USD) saves the life of a child for one month. The cost of a dozen roses gains a child in another part of the world an entire year to play, go to school, and be with their families. Who doesn’t love that? There are children all over the world who are depending on us. So please, take time right now. Go to LFACInternational.org/SpareaRose and make your life-sustaining donation.  I hope you enjoy my conversation with Renza! Reference Material - Click below for more information on this topic Renza Scibilia is a gifted writer, and you can read her at: Diabetogenic.wordpress.com Be part of the Spare a Rose, Save a Child campaign this year by making your donation at: LFACInternational.org/SpareARose

Once called deliberately non-compliant, this week's guest is all about the importance of language when it comes to diabetes. Renza Scibilia has some strong opinions about why words really matter. We’ll talk more about her non compliance – it has to do with her Looping, using one of the do it yourself options - and about her diagnosis as a young adult. Plus, information from Diabetes Australia and The Grumpy Pumper In our Community Connections this week, the Type 1 Renegade Run is making noise in the Northeast. The event this past weekend marks the 7th year of this obstacle course and block party. And a closer look at keeping insulin at the right temperature from the pharmacy to your fridge. JDRF, ADA & Helmsley Trust are teaming up to study this issue.  Did you see Chris Ruden pop up in the NBC Titan Games promo?! Here's our interview with the T1D body builder from last year.   Join the Facebook Group!  ----- 1:30 Stacey Welcome - Syracuse and DC round ups, looking ahead to the DiabetesMine Summit 4:00 Interview with Renza Scibilia 39:40 Interview with Renegade Run's Tyson Sunnerberg 52:00 Know Better: insulin study ------ 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   

Celebrating Diabetes Podcast Week 2018 and the launch of the Spare a Rose campaign, I'm joined by Renza Scibilia for a conversation about patient communities crossing borders, and oceans. We cover Renza's diabetes diagnosis, the value of peer support locally and abroad, how Australia's healthcare system matches up with the rest of the world, and the importance of language and word choice when we talk about the patient experience. Keep up with Renza on Twitter @RenzaS and diabetogenic.wordpress.com. Learn more about Diabetes Podcast Week here and visit sparearose.org to make a donation to Life for a Child. Run Time - 36:28 Send your feedback to feedback@justtalkingpodcast.com.