lipoedema

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

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: 

1. "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/
    
2. 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
    
3. "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/
    
4. CurvyGirl Beth Lipedema videos https://www.facebook.com/pg/Curvygirlbeth/videos/?ref=page_interna
    
5. Lipedema Foundation Brochures: https://www.lipedema.org/resources
    
6. 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
    
7. Carol's Blog: fucklipedema.com
    
8. Carol Nogueira on Medium: https://medium.com/@thecarolnogueira

Spotlight 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

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/UCTm9CAiKtmcYm0X1j2qrDEQ

Music 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.

1. https://www.fatdisorders.org/lipedema
    
2. Obesity Medicine Association, obesitymedicine.org, podcast, "Interview with Dr. Karen Herbst: Obesity versus Lipedema."
    
3. "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
    
4. "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
    
5. Video: Lipoedema "We want to keep moving"
    
6. https://www.lymphcareusa.com/professional/therapy-solutions/complete-decongestive-therapy.html
    
7. 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.php

Show Less

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