Episodes
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It's finally out! Episode 15 of the Spotlight Lipedema is out - featuringPart 2 of my interview with Beth Rylaarsdam. This was a great conversation about how CurvyGirlBeth made her debut. We talk about how lipedema ladies tend to hide from picture or hide themselves and their legs in pictures and why Beth thinks that needs to change. How do we share knowledge of lipedema when we encounter people that appear to have it too.
Find Beth Here:
https://thecurvygirlbeth.com/links/
Instagram: https://www.instagram.com/curvygirlbeth/
Facebook: https://www.facebook.com/Curvygirlbeth
TikTok: https://www.tiktok.com/@curvygirlbeth
All Music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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It's finally out! Episode 14 of the Spotlight Lipedema is out - featuring Beth Rylersdaam - Curvy Girl Beth. It was a great conversation - so good that we just kept chatting. So here's Part 1 of our conversation all about Beth's Lipedema discovery and what she's done to manage it.
Stay tuned for Pt. 2 where Beth talks about how she became Curvy Girl Beth.
All Music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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Episodes manquant?
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This episode is a bit different than what we've done before. I had the chance to speak with Dr. Guy Eakin, the Chief Science Officer of The Lipedema Foundation. Dr. Eakin provides some background on the Foundation and the work they are doing to provide funding for lipedema research.
In our conversation, we learn a bit about the main areas of research that are the current focus of The Foundation, what projects they have recently funded, and some of the areas of research that appear promising at this time. We also talk a bit about the challenges of the research and why developing tools for the diagnosis of lipedema is so difficult.
And finally, we talk about how those of us with lipedema can contribute to lipedema research.
Lipedema Foundation LInks:
Home page: https://www.lipedema.org/
Lipedema Foundation Registry: https://www.lipedema.org/registry
How to Find a Specialist: https://www.lipedema.org/findspecialists
Lipedema Brochures: https://www.lipedema.org/brochure
Foundation Blog: https://www.lipedema.org/blog
Innovative Solutions for Lipedema & Lymphedema Symposium 2021 Registration: https://learn.lipedema-simplified.org/holisticsymposium-oct2021
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php -
It's June and that means it's Lipedema Awareness Month. I hope that you will be taking advantage of all the events that will be occurring online to educate us and the general public about lipedema. There's too much for me to list here, but you can use these links for information on these events:
From Lipedema Simplified: Lipedema Awareness Month Webinar Series 2021 (mykajabi.com)
From Lymphapress: Mind, Body & The Matrix: The Role of Pumps and Other Therapies for Lipedema - Webinar Registration - Zoom
Lipedema Patient Roundtable: Webinar Registration - Zoom
Webinar: Comprehensive Treatment for Lipedema: What You Can Do - Webinar Registration - Zoom
In the midst of the Covid crazy, I had the chance to speak with Nita Clewis. We spoke about finding peace with our diagnosis and our challenges, while at the same time, continuing to meet those challenges through self-care. How do we stay focused on self-care in a crazy world - especially as we try to get things back to something that resembles normal.
Nita goes over what her daily self-care routine looks like, and how she keeps herself motivated to do it every day, while I try to not beat myself up too much for not doing everything I should be doing. I'm sure this episode will strike a note with many facing lipedema and everyday self-care challenges. If you like more words of wisdom from Nita, you can find them on her blog - The Whole and Balanced Living blog at https://www.facebook.com/WholeBalancedLiving.
My cockatiels tried to join in the conversation too, so I apologize for the distraction. With or without them, I think you'll find Nita's advice helpful.
I also discuss the recent release of the U.S. Standards of Care for Lipedema. Other countries have had such guidelines for years, but the US has just released our very first guideline. This is really important stuff to read and to share with your medical providers. Worth noting - lipedema is being reclassified from a "fat disorder" to a disease of the loose connective tissue. This can really help how the medical community perceives the disease and hopefully will lead to more money for lipedema research and better health insurance coverage. You can find an abstract and link to the report here: https://journals.sagepub.com/doi/10.1177/02683555211015887?fbclid=IwAR3Stk9_GHF7JEbUTdRs40D01FTGRhswjczcLD2zJX4TYo3_Z3cjGSKOTzc
All podcast music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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The Spotlight Lipedema Podcast is back for a quick episode to catch up with what's been going on and to let you know that we're still here - Getting ready for Lipedema Awareness Month in June.
Intro Music "Walk in the Park,"
Closing Music "In the Field,"
courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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Well, this was a jam-packed episode! I had the chance to talk (and kind of geek out) about some of the science behind lipedema and the lymphatic system with Leslyn Keith. One of the things you realize when you have lipedema is that there is a lot to learn about adipose tissue, the lymphatic system, and how to manage lipedema and lipo-lymphedema. I got the chance to ask Leslyn some questions about the lymphatic system, about the function of fat in the body - and why we need to eat fat. We discussed one of several eating plans followed by people with lipedema - eating ketogenically. Ketogenic eating focuses on eating protein and fat, and keeping carbohydrates very low. Many people, including people with lipedema, find that this way of eating helps reduce or minimize inflammation in the body. This way of eating won't necessarily work for everyone - based on individual food sensitivities and health history, but it is definitely worth exploring.
Leslyn Keith Website: www.leslynkeith.comLipedema Project: www.lipedemaproject.orgLipedema Simplified: www.lipedema-simplified.orgLiving Well with Lipedema Mini-podcasts: https://player.whooshkaa.com/shows/living-well-with-lipedemaDr. Ben Bikman: https://lifesciences.byu.edu/directory/benjamin-bikmanDr. Bikman's Organization, InsulinIQ: https://www.insuliniq.com/Dr. Stanley Rockson's lymphedema and lipedema biomarker study: https://insight.jci.org/articles/view/135109Website for Lipedema researcher Dr. Natasha Harvey: https://people.unisa.edu.au/Natasha.HarveyQuality of Life Research for Lipedema by Dr. Joanna Dudek: https://pubmed.ncbi.nlm.nih.gov/26216585/Survey of Lipedema Woman Report - "New Insights on Lipedema: The Enigmatic Disease of the Peripheral Fat": https://pubmed.ncbi.nlm.nih.gov/31764671/ International Lymphatic Disease and Lymphedema Patient Registry and Biorepository: https://lymphaticnetwork.org/living-with-lymphedema/researchers-need-youKetogenic Solution for Lymphatic Fat Disorders Virtual Symposium Registration: https://masterclass.mykajabi.com/ketolymphcon2020/
Links to Leslyn and things we mentioned in the podcast.Relevant Facebook Groups:
Keto Way of Eating for Lipedema: https://www.facebook.com/groups/LipedemaKetoWOE/
Lipedema - The Disease they Call Fat: https://www.facebook.com/groups/lipedemabookdiscussion/
Lipedema/Lipoedema Simplified Support: https://www.facebook.com/groups/LipedemaSupport/
Keto for Lipedema Worldwide Summit Tribe: https://www.facebook.com/groups/ketolipedematribe/
InsulinIQ (Dr. Ben Bikman): https://www.facebook.com/groups/insuliniq/***************************
Intro Music "Walk in the Park," and Closing Music "In the Field," courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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In the lipedema world, Carol Nogueira is lucky to be one of the ones to discover her lipedema when she was still at stage one. That doesn't mean that discovery was without its challenges. We also talk about how it can be overwhelming to get this diagnosis and how it becomes part of our identity. Carol also talks about how she figured out that she had lipedema and then her experience finding a surgeon to help her try to keep it there. Listen to hear about her lipedema journey that has taken her to be one of our community's Lipedema Advocates.
Show Links:
Carol Nogueira Links:
F*Lipedema Blog: http://fucklipedema.com/
F*Lipedema on Facebook: https://www.facebook.com/F-Lipedema-110806687363274/Lipedema Articles on Medium: https://medium.com/search?q=Carol%20Nogueira
Change.org Petition to cover liposuction for lipedema: http://chng.it/nGFHWb7R?fbclid=IwAR1cey5LAhY59qv4IWaGa0BRuUnrFke0VEANid-1blQURO-qEgJaNAsRUcc
Lipedema Awareness Month Links:
"Lipedema and Lymphedema: Mythbusting and Case Controversies" featuring Dr. Karen Herbst, Dr. Steven Dean, Dr. Thomas Wright and Dr. Tony Gasparis. https://tactilemedical.com/learning/
The Lipedema Channel on YouTube features multiple videos with a couple of Lipedema Roundtable discussions and interviews with Lipedema Patient Advocates https://www.youtube.com/c/TheLipedemaChannel/videos
"New Insights on Pathophysiology and Treatment of Lipedema" with Dr. Karen Herbst and "The Psychosocial, Clinical, and Dietary Impacts of Lipoedema," with Dr. Catherine Seo, Dr. Matthew Carmody, and Dr. Leslyn Keith. https://www.lympha-press.com/blog/
CurvyGirl Beth Lipedema videos https://www.facebook.com/pg/Curvygirlbeth/videos/?ref=page_interna
Lipedema Foundation Brochures: https://www.lipedema.org/resources
Carol's Petition for Insurance Companies to cover lipedema treatment: https://www.change.org/p/blue-cross-blue-shield-insurance-companies-need-to-cover-liposuction-for-lipedema-other-medical-needs
Carol's Blog: fucklipedema.com
Carol Nogueira on Medium: https://medium.com/@thecarolnogueiraSpotlight Lipedema Music
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php -
Today we talk about surgery. Are you thinking about liposuction for your lipedema / lipoedema? Does the thought make you nervous that you don't know everything you need to know. My conversation with Maria Kokkinou Boege may give you some peace.
We start off talking about Maria's lipoedema journey, then move on to the fabulous Facebook group she has put together. A support group where women share the experiences searching for the right surgeon and then their surgery successes and challenges. The group also provides a wealth of resources on how to get you ready to make that decision and what to do as you prepare for surgery day.
Here's the link to this private, patient-only Facebook group:
https://www.facebook.com/groups/mylipoedematreatmentjourney/
Thanks to Maria for setting up the group and for taking the time to join me for this podcast episode.
All Podcast Music is courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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Well, this episode took some time coming. Technical issues and a injury to my arm made getting it together a bit of a challenge, but hey, we finally got it done.
In this episode, we talk briefly about June being Lipedema Awareness Month, then move on to my conversation with Selena Chronister. She may be familiar to you if you have visited her YouTube channel, "Selena Sez" where she has instructional yoga videos that are made specially for women with lipedema. If you haven't found it yet. Here's the link.
https://www.youtube.com/channel/UCTm9CAiKtmcYm0X1j2qrDEQMusic courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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Well, this episode was long in coming out. Sorry for the delay. I have to admit, I've been pretty focused on the news about the coronavirus, and that slowed down the process a bit, but I'm back on track now.
This project may sound a little be choppier than normal because it is the first one I've done mostly by myself, with some assistance from my wonderful producer Chris Duckman. My goal has been doing this on my own without having to pester him too much, so I am on my way.
To start things off, I talk a little bit about grief and how we experience grief as a part of getting a lipedema diagnosis - and that is okay. It is totally normal. We just need to recognize it and not let it get to us too much - and figure out what we can do to deal with it as time goes on. It will get better, even if it's a bumpy road to peace of mind.
Then I talk about how I've adapted to being mostly homebound in the last couple of years and what I am doing to try to make things continue to improve. It is definitely a challenge in the best of times, but even for someone who doesn't leave home very often, coronavirus days have been a challenge.
Then the episode wraps up with another visit with Pattie Cornute where she talks about how she is adapting to working out at home now that she can't visit the gym or pool for a while. She's got some great ideas on how you can adapt your workout - or maybe (like me) start working out at home.
I hope you enjoy it.
Links from this episode:
Lymphatic Yoga with Edely Wallace https://lymphaticyoga.net/Lipedema Fitness Blog: http://www.lipedemafitness.com/Dr. Melissa Gallagher's alternate rebounding video: https://www.youtube.com/watch?v=UCCMSdNnJKoIntro Music "Walk in the Park," Bumper Music "Folk Bed," and closing music, "In The Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
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This Episode was long in coming. It took me a bit of time to figure out exactly how to address the topic of inflammation. I was inspired by a particularly bad bout with inflammation and thought that I really needed to be more mindful of what triggers it for me - and STOP DOING THAT! I'm sure I'm not alone.
Of course there were other things that would come up and I'd need to divert my attention away from the podcast and take care of other business.
So in Episode 5 we look at inflammation. I go over the differences between acute inflammation and chronic inflammation, triggers of inflammation and some of the things we can do to alleviate it when it happens.
I hope you find this episode enjoyable, informative and helpful. Let me know what else you would like to hear on the podcast.
Take care until next time!
Producer: Chris Duckett - https://www.duckettproductionservices.com/
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.phpSources:
"What is Inflammation?" livescience.com, https://www.livescience.com/52344-inflammation.html"Understanding and Managing Chronic Inflammation, healthline.com;, https://www.healthline.com/health/chronic-inflammationLymphedema Treatment Act: https://lymphedematreatmentact.org/"Help us Shape the Conversation on Diversity in Research Participation!: https://www.nia.nih.gov/research/blog/2020/01/help-us-shape-conversation-diversity-research-participation?utm_source=NIA+Main&utm_campaign=69bb4babd7-20200115_blog&utm_medium=email&utm_term=0_ffe42fdac3-69bb4babd7-8209169&fbclid=IwAR1Jp17cqr_Tx5MTiDKo54XIlKwgPzbyNeKLP1GQKEMlYtzYNNWy9MyxCPY"Inflammation," Foldi's Textbook of Lymphology for Physicians and Lymphedema Therapists," , Michael Foldi, Ethel Foldi, 2nd edition, 2006, Elsever, Urban & Fischer, pp 411-416."10 Causes of Inflammation," https://facty.com/ailments/inflammation/10-causes-of-inflammation/2/"Omega-6 fatty acids and inflammation," Innes, JK, Calder, PC, Prostaglandins Leukot Essent Fatty Acids. 2018 May;132:41-48. doi: 10.1016/j.plefa.2018.03.004. Epub 2018 Mar 22."Sleep and inflammation: partners in sickness and in health." Michael R. Irwin, 9 July 2019, https://www.nature.com/articles/s41577-019-0190-z -
Shownotes:
I am really excited about this episode of the Spotlight Lipedema Podcast. This month I'm sharing my conversation with Pattie Cornute, the founder of the Lipedema Fitness Facebook Group and the website/blog Lipedema Fitness. You are going to want to listen to this inspirational story of how Pattie went from struggling with the challenges of reduced mobility to being a fitness leader for the lipedema community. Pattie shares some of the challenges she faced and shows how she decided to buck the advice she was given and take the fight to lipedema.
FDRS Conference Information: https://www.fatdisorders.org/events
FDRS Past Conference videos on YouTube: https://www.youtube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q/videos
Ketogenic Solutions for Lymphatic/Fat Disorders Conference: https://www.eventbrite.com/e/ketogenic-solution-for-lymphaticfat-disorders-conference-tickets-90268544647?fbclid=IwAR04Ry89zvEsf30SbeRr4Cxsnn__BwlRAiEo5R8Ss0jty9vgTiUpuU0zXlo
Inclusion Across the Lifespan II: https://www.nia.nih.gov/research/blog/2020/01/help-us-shape-conversation-diversity-research-participation
Lipedema Fitness on Facebook: https://www.facebook.com/groups/LipedemaFitness/
Lipedema Fitness Blog: http://www.lipedemafitness.com/
Lipedema Triathalon 2020: https://www.facebook.com/events/836300716818750/
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Producer: Chris Duckett - https://www.duckettproductionservices.com/
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php -
Happy New Year! I am really excited start of 2020 by sharing this episode with you. In Episode 3 of the Spotlight Lipedema Podcast, I got the chance to chat with fellow Lipedema Sister Mariam Aladdin. Miriam shared her lipedema story and provided some great insights for people that have just gotten diagnosed. Miriam also shares what she does to help manage her lipedema, as well as some of the challenges she faces from day-to-day. I hope you enjoy listening to this as much as I enjoyed making it.
Links to some of the people and things we discuss:
1) Maureen McBeth Lymphedema Consulting - https://www.mmcbethconsulting.com/about
2) Maureen McBeth CLT practice = http://www.foreverfitptw.com/Locations/Columbia
3) Maureen McBeth at FDRS Conference 2019 - https://www.youtube.com/watch?v=bzzwkZ2R-gM
4) Edely Wallace Lymphatic Yoga - https://lymphaticyoga.net/
5) Edely Wallace at the FDRS Conference 2019 -https://www.youtube.com/watch?v=C3i9eemGOKM
6) Fat Disorders Resource Society - www.fatdisorders.org
7) FDRS Conference on YouTube - https://www.youtube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q/videos
8) Lipedema Sisters USA on Facebook - https://www.facebook.com/groups/lipedemasistersusa/?ref=bookmarks
9) Lipedema SIsters of the Mid-Atlantic on Facebook - https://www.facebook.com/groups/780638608760704/
Producer: Chris Duckett - https://www.duckettproductionservices.com/
Intro Music "Walk in the Park,"
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php -
Well, we finally got episode two completed. This one brought some technical issues to slow its release a bit, but we finally got something together to release. It's not perfect, but we learn as we go. Not to mention a mouth that didn't want to get all the words out the way I wanted, but hey, it happens.
So, on the second episode, we look at what the differences are between obesity and lipedema, and why it is so important for people, especially doctors to know the difference. We look at the types of lipedema and the stages of lipedema and why a doctor needs to learn how to make a diagnosis. Then we move on to the psychological and emotional impact of having lipedema. Finally, there's a brief summary of the treatment methods used to manage lipedema and why we need to be proactive about getting people informed and advocating for lipedema research and legislation to require insurance coverage for all the mentioned treatment methods.
https://www.fatdisorders.org/lipedema
Obesity Medicine Association, obesitymedicine.org, podcast, "Interview with Dr. Karen Herbst: Obesity versus Lipedema."
"Lipedema The Disease They Call Fat: An Overview for Clinicians," Lipedema Simplified Publications, The Lipedema Project at the Friedman Center for Lymphedema Education & Research and Treatment, The Center for Advanced Medicine at Northwell Health, Lymphatic Education & Research Network. Authors Erez Dayan, Julie N. Kim, Mark L. Smith, Catherine A. Seo, Robert J. Damstra, Wilfried Schmeller, Yvonne Frambach, Mathew Carmody, Etelka Földi. www.lipedemaproject.org
"Lipedema: friend and foe," Yanira Sanchez-De la Torre1 / Rita Wadeea1 / Victoria Rosas2 / Karen L.Herbst1 , https://www.degruyter.com/view/j/hmbci.2018.33.issue-1/hmbci-2017-0076/hmbci-2017-0076.xml
Video: Lipoedema "We want to keep moving"
https://www.lymphcareusa.com/professional/therapy-solutions/complete-decongestive-therapy.html
Lymphedema Treatment Act: https://lymphedematreatmentact.org/
Producer: Chris Duckett - https://www.duckettproductionservices.com/Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.phpShow Less
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Welcome to the debut episode of the Spotlight Lipedema Podcast. I can't describe how excited I am to get this podcast finally started. It has been long in the making. I've been rolling ideas around in my head for well over a year, but finally got things together, and with the help of my wonderful producer Chris Duckett, was able to get this episode done and the podcast officially launched. Hopefully, this is just the first of many, many more to come.
On this episode I'm going to give a quick introduction to lipedema for any listeners that may be unfamiliar with it or who've been recently diagnosed. That will be just a baseline for what will become my story - how I have dealt with being fat for most of my life, and how I came to be diagnosed. How I'm living with lipedema will be saved for future episodes. Also in future episodes, we'll get into more detail about lipedema and hear the stories of people with different stages and types lipedema and at different ages. I think you'll find that we have lots of similarities in our stories, but what we can really learn from is how our experiences have varied.
Like everyone diagnosed with lipedema, I've had to learn a lot about what it is, what it isn't, and how to deal with it. I encourage everyone to visit the following websites that have been so helpful to me.
Treatment, Research & Education of Adipose Tissue Program at The University of Arizona Health Sciences: https://treat.medicine.arizona.edu/
The Lipedema Foundation: https://www.lipedema.org/about-lipedema
Fat Disorders Resource Society: https://www.fatdisorders.org/lipedema
The Lipedema Project: https://lipedemaproject.org/
Lipedema Simplified: https://lipedema-simplified.org/
Special thanks to the wonderful people who have been so supportive to me as I started my lipedema journey - Abbi Bliss, Maureen McBeth, Joni Donlon, Kate Megonnell, Barb Steinberg, Carol Zisfein, Helen Luqman, Emilza Ordonez, Susan McVey, Mary Pellnitz, Raina Singh, Wednesday Vail, Miriam Aladdin, Dr. David Song, Kimberly Miller, Myrna Marcellin, Dr. Nadiv Shapira, Dr. Janna Latchchinina, Catherine Seo, Leslyn Keith, Mende Staggs, and Raeannn Sparks - and of course all the wonderful people on Dr. Song's team at Georgetown University Hospital and on 7 Bles.
This episode is dedicated to the strong women in my life who now guide me from Heaven - Julia "Judy" Pellnitz, Catherine "Kitty" Spaluzzi, Anna Commesso and my spirit sister Jackie Conti Antretter. I love and miss you all.
Producer: Chris Duckett - https://www.duckettproductionservices.com/
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php -
Welcome to the debut episode of the Spotlight Lipedema Podcast. I can't describe how excited I am to get this podcast finally started. It has been long in the making. I've been rolling ideas around in my head for well over a year, but finally got things together, and with the help of my wonderful producer Chris Duckett, was able to get this podcast officially launched. Hopefully, this is just a quick introduction, but the first of many, many more to come.
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
