What Is Lipedema, Really? | Dear Body Book Club: Chapter 1

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"Maybe we don't have every answer yet, but we have something we didn't have before: momentum, curiosity, research, hope, a textbook." —Donna Piper Welcome to the very first official Dear Body Book Club episode! In this new series, we're opening the books that are shaping the future of chronic illness care and translating the research into everyday language. Today we're exploring Chapter One of the newly released medical textbook: Lipedema: Principles and Practice of Diagnosis and Treatment Edited by Stanley G. Rockson, MD, Leslyn Keith, OTD, and Catherine Seo, PhD (Springer Nature, May 2026). Together, we discuss Chapter One: "What Is Lipedema? Moving Towards a Widely Accepted Definition" by Sandro Michelini and José Luis Simarro Rather than reading the chapter word for word, I pull out the concepts that stood out to me, translate the medical language into plain English, and explain why these ideas matter for those of us living with lipedema. In this episode, we discuss: What lipedema is—and what it isn't The history of lipedema and why recognition matters The World Health Organization's recognition of lipedema in ICD-11 Germany's recognition of lipedema within its healthcare system The newly approved U.S. ICD-10-CM diagnosis codes expected to take effect in October 2027 Why lipedema is different from obesity Why BMI alone often misses women with lipedema Genetics and why lipedema may be inherited through either side of the family Hormones, puberty, pregnancy, perimenopause, and menopause Emerging research on connective tissue and childhood-onset lipedema Clinical diagnosis and staging Pain, inflammation, and tissue changes Common comorbidities associated with lipedema Current diagnostic tools Conservative and surgical treatment options discussed in Chapter One Where lipedema research is headed Resources Table 1.1 – Differential Diagnosis of Lymphedema and Lipedema Adapted from Chapter One of Lipedema: Principles and Practice of Diagnosis and Treatment (Michelini & Simarro, 2026). Clinical Feature Lymphedema Lipedema Family history Possible Often present Gender Male or female Almost exclusively female Limb involvement One or both limbs Usually both limbs (bilateral) Hands and feet Usually involved Usually spared Age of onset Birth, childhood, or adulthood Most commonly at puberty (may occur before puberty) Joint hypermobility Usually absent Often present Pitting edema Usually present Usually absent Stemmer sign Usually positive Usually negative Pain Usually absent Common Response to conservative therapy Generally good Varies Response to surgery Variable Generally good for appropriate candidates Compression garments Flat-knit custom garments (Class II–IV) Flat-knit custom garments (Class I–III), depending on the individual Clinical follow-up Regular As needed 💛 What this means in plain English One of the biggest takeaways from this table is that lipedema and lymphedema are not the same condition, even though they're often confused. Women with lipedema are more likely to have: Symmetrical enlargement of both legs (and sometimes arms) Feet and hands that are usually spared Painful fat tissue Joint hypermobility A negative Stemmer sign A family history of similar body shapes People with lymphedema are more likely to have: Swelling that includes the feet or hands A positive Stemmer sign Pitting edema Less pain in the affected tissue Different treatment goals and progression A trained clinician looks at all of these features together—not just one—to help determine the correct diagnosis. Key Takeaways from Chapter One Lipedema is a recognized disease of adipose tissue—not simply obesity. Lipedema most commonly affects women and often runs in families. Hormones appear to influence lipedema, but genetics and connective tissue may also play important roles. There is currently no single laboratory test to diagnose lipedema. Diagnosis is based on clinical examination. Complete Decongestive Therapy (CDT) can improve symptoms but does not remove pathological lipedema tissue. There is currently no medication scientifically proven to treat lipedema itself. Liposuction is an important therapeutic option for appropriately selected patients. Bariatric surgery does not treat lipedema. More research is still needed to better understand the disease. Research & References This episode is based primarily on: Michelini, S., & Simarro, J. L. (2026). What Is Lipedema? Moving Towards a Widely Accepted Definition. In S. G. Rockson, L. Keith, & C. Seo (Eds.), Lipedema: Principles and Practice of Diagnosis and Treatment. Springer Nature. Additional references cited by the chapter's authors can be found in the reference section of Chapter One (pp. 13–15) of the textbook. About the Dear Body Book Club The Dear Body Book Club is a series on Dear Body, I'm Listening, where we explore books that are shaping the future of chronic illness care. Each episode translates medical research into plain language while remaining faithful to the authors' work. These conversations are designed to help listeners better understand their bodies and the evolving science behind chronic illness. They are not a substitute for reading the original textbook or receiving personalized medical care. If you'd like to explore the research in greater depth, I encourage you to purchase the textbook and read the chapter for yourself. 💛 Connect With Me If this episode resonated with you, I'd love to hear from you. ✨ Follow the podcast. ⭐ Leave a review. 📚 Share this episode with someone navigating lipedema or chronic illness. And if you're reading along with me, let me know: What was your biggest takeaway from Chapter One? Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/lipedema_donna [https://www.instagram.com/lipedema_donna] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Podcast: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774 [https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774] Episode Chapters: 01:56 Welcome to the Dear Body Book Club 05:24 The 1940 Origins of Lipedema Recognition 09:27 What Is Lipedema? Defining Abnormal Adipose Tissue 12:47 BMI Myths and the Genetic Link Through the Father's Side 16:44 Hormones, Connective Tissue, and Childhood Onset 18:24 Treatment Options: CDT, Compression, and Surgery 27:27 Why Bariatric Surgery Doesn't Solve Lipedema 31:47 Donna's Sticky Notes 37:24 Dear Body Letter 38:59 Shared Education and Lived Experience

How Lyme Disease Stole a Decade —And What Came After with Diana Gordon

"I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon When your brain won't stop looping through everything that's wrong, distraction isn't avoidance — it's medicine. That's one of the hard-won truths poet and novelist Diana Gordon shares in this episode of Dear Body, I'm Listening, after spending a decade navigating undiagnosed Lyme disease, neurological sleep disruption, and the particular grief of the world going on without you. Diana opens up about five years of dismissed symptoms before finally finding effective treatment, what the loneliness of chronic illness actually feels like from the inside, and the one friend whose phone calls every three days proved more healing than any support group. She also shares the unexpected story of how reading her unpublished novels aloud to a bedridden friend — someone living with a severe, rare pain condition — not only mitigated that friend's pain in real time, but reignited Diana's own creative life. Three books are now coming out as a direct result. Diana reads two original poems live in this episode: "Letter from a Long Illness" — a meditation on the invisible solidarity between people sick in separate rooms, written to every person who doesn't know if they'll ever get out of it. "Medicine in Mystery" — sparked by a Chinese acupuncturist who diagnosed her with demonic possession and prescribed dragons. She also talks binaural beats, the medicinal power of Netflix, and why conversation — just ordinary, everyday conversation — may be the most underrated healing tool there is. Diana's poetry book Loosestrife for Porcupines is available now at dmgordon.com. Her Substack, Leaf Sheep, delivers short animal poems to your inbox — perfect for interrupting the loop on a hard day. Poem 1: "Letter from a Long Illness" If you have been to this land as I have been, where I am now, You will know the chill fog. Know that the fig tree, so far from light, will not fruit. Maybe you are here, even as I write. Maybe you haven't escaped. We can't see each other — alone in different sick rooms of the same country, borders closed, pinned motionless. We did not meet at the atrium. You didn't complain your jeans were tight and choose the Reuben. I didn't use a matchbook to study a table leg. We don't do simple things here, where minutes are broken, and we can't make plans. Though you can't see or hear me, I'm writing on the faith that saying it keeps possibility alive, that it might not be too late for either of us to hike the prairie and collect sand spurs on our socks, to drive ourselves into thunderstorms. Not too late to stroll down Madison Avenue, admiring shirts displayed on seas of opalescent buttons. We might yet pass each other on the boardwalk, you in your tight jeans, shopping artisan stalls, your little dog in a basket on your handlebars, waiting for the borders to open — on the faith that thinking it keeps possibility alive, I am hoping to meet you there. Poem 2: "Medicine in Mystery" I've come at last to the Chinese doctor — diagnosis: demonic possession, spirochetes unbound by tissue, blood, or bone. His cure: release the dragons — iridescent white to fight the unnamed, salmon-colored to attack the known. I imagine them with folded wings, small enough to swim in human cells, sent after demons equally ancient, equally small, wh0 show themselves in cytoplasm the way creatures in opaque ponds create concentric rings unseen, break the skin of the water, Then return to hide in the mud. The war proceeds between the winged and wingless, And as in all histories, the winner will write it. The winner will be deemed good, Though every demon, electric, toxic, feels it is a child of the universe. Yet isn't there something always wrong about invasion? something always noble about defense So, in the end, I stand on a lacquered bridge over swollen runoff, a churning pond behind — It's April, ice on all the edges, the air hurts wonderfully to breathe, the water foams white, the sky, late and high, is riddled with salmon-colored contrails. The last dragons leaving. Connect with Donna: Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/thedonnapiper [https://www.instagram.com/thedonnapiper] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Resources: 📖 Loosestrife for Porcupines by DM Gordon 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com, and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e [https://join.makevisible.com/73784699c7db3e] **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v [https://oken.do/0l3hpr6v] 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 [https://www.equipfoods.com/DONNA15] 📖 Get Tricia's Book: Heal Your Hunger: 7 Simple Steps to End Emotional Eating Now Episode Highlights: 03:03 Meet Diana: A Lyme Disease Odyssey 08:33 Why So Many Are Getting Lyme Disease 15:08 Crushing the Loneliness of Chronic Illness 19:03 Conversation is a Medicine 29:00 Brain Looping Challenges 35:52 Poem: Letter From a Long Illness 39:54 Poem: Medicine in Mystery 45:04 Grab Diana's Books 52:02 Life After a Lost Decade Quotes: 02:02 "A lot of times, when we go through stuff, that's when some of our deep creativity comes out. There's always that beauty in the crack." —Donna Piper 06:32 "There was a year and a half when I was on 81 pills a day, taken 17 different times a day… I think this is a pretty common journey for people who are struggling with mystery illnesses." —Diana Gordon 14:35 "Depression is a real part of chronic illness. You need to know what works for you, too." —Donna Piper 19:17 "Just having a conversation is so healing when you can't do anything else." —Diana Gordon 26:03 "It didn't take a whole organization to do it, just that one person and that conversation. I think conversation is medicinal." —Diana Gordon 51:20 "You need to find these little moments to slow down and to heal yourself very slowly. It's a very long game. But by doing that and finding pleasures in that, then you really start to heal." —Donna Piper 52:10 "I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon 53:57 "You can get better, you do get better." —Donna Piper Connect with Diana: Website: https://www.dmgordon.com/ LinkedIn: https://www.linkedin.com/in/ddmgordon/ Instagram: https://www.instagram.com/d_m_gordon_author/ Facebook: https://www.facebook.com/profile.php?id=61588185188220 Substack: https://ddmmgordon.substack.com/ YouTube: https://www.youtube.com/channel/UC3M3_JOf5wJOdhaAr4HwHIA BlueSky: https://%20https//bsky.app/profile/dmgordon.com

25 de jun de 202658 min

What Is Lipedema, Really? | Dear Body Book Club: Chapter 1

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