Beyond the Diagnosis: Dr. Nicole Kramer’s Story

Beyond the Diagnosis: Dr. Nicole Kramer’s Story

Dr. Nicole Kramer on 33 Years of Misdiagnosis, Medical Gaslighting, and Finding Answers with LipedemaHosts Cindy andKristy welcome Dr. Nicole Kramer, a clinical psychologist and “fellow lippy lady” diagnosed with stage 3 lipedema at 43 after decades of misdiagnosis and dismissal, despite being seen at major medical centers. She shares early signs in childhood, progression during hormonal shifts and stress, and how a community hospital lymphedema clinic director finally identified her textbook lipedema, later confirmed by Dr. Herbst. The conversation covers medical uncertainty, obesity stigma, systemic pressures that reward physician certainty, and how the lack of U.S. ICD-11 adoption and billing codes contributes to poor recognition and insurance barriers. Dr. Kramer discusses treating the experience as trauma, the importance of advocacy and community, and her lipedema reduction surgeries with Dr. Volshteyn (legs and arms, with another upcoming), pursued largely due to declining mobility. She also shares her Substack, Beyond Zebras, focused on navigating misunderstood conditions.00:00 Welcome to the Podcast00:55 Sponsor Message01:42 Meet Dr Nicole Kramer03:23 Her Lipedema Journey06:57 Dismissed by Experts08:59 Accident and Rehab10:53 Finally Diagnosed13:58 Why Doctors Miss It16:10 ICD Codes and Coverage18:16 Beyond Zebras Framework21:50 Seeing Lipedema Everywhere23:48 Medical Gaslighting Impact25:59 Doctor Culture and Certainty28:00 Doctors Under Pressure30:30 Sick Care Reality Check31:22 Diagnosis Doubt and Gaslighting33:21 Trauma and Coping Tools38:16 Lipedema Surgery Journey40:35 Insurance and Access Barriers43:13 Mobility and Legal Advocacy45:18 Teaching Providers and Power Dynamics49:19 Hormones and Women's Health Gaps51:18 Where to Connect Next52:28 Final Episode Wrap Follow us on Social media!!! Kristy's Contact information: IG⁠⁠⁠⁠⁠ ⁠⁠⁠ [https://www.instagram.com/sunrisehealingaz?igsh=bnNleGpubHhhdDFr&utm_source=qr]⁠⁠⁠https://www.instagram.com/dellalunawellness/⁠⁠⁠ [https://www.instagram.com/dellalunawellness/] FB Group⁠⁠⁠⁠ ⁠⁠https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr] Website  Kristy Dellacroce, MS,OTR/L, MLD-C ⁠⁠ ⁠⁠Dellalunawellness.com⁠⁠ [http://www.dellalunawellness.com] ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [http://sunrisehealingaz.com/]Lipedema Advocate 856-297-7437 Cindy contact information ⁠FB:⁠⁠⁠ ⁠https://www.facebook.com/withcindyhowell⁠⁠⁠⁠⁠ [https://www.facebook.com/withcindyhowell%E2%81%A0%E2%81%A0] Private FB Group:⁠⁠⁠⁠⁠ ⁠https://www.facebook.com/groups/7021999704562921⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/groups/7021999704562921] IG:⁠⁠⁠⁠⁠ https://www.instagram.com/lipedema_withcindyhowell/⁠⁠⁠ [https://www.instagram.com/withcindyhowell/] Cindy Howell RN, CLT, MPHC Website:⁠ ⁠⁠⁠⁠⁠www.withcindyhowell.com⁠⁠⁠⁠⁠⁠ [www.withcindyhowell.com⁠⁠⁠⁠⁠⁠] Lipedema advocate: 860-550-1161 Top 5 Foods to Avoid for Managing Lipedema! Link:⁠⁠⁠ https://withcindyhowell.com/checklist/⁠⁠⁠ [https://withcindyhowell.com/checklist/] Free surgery course:⁠⁠ ⁠⁠⁠⁠ [https://l.bttr.to/6cATB]⁠⁠https://l.bttr.to/6cATB⁠⁠⁠ [https://l.bttr.to/6cATB%E2%81%A0] https://www.instagram.com/stronger_than_lipedema_podcast/ This episode is proudly sponsored by Lipoelastic Compression Don’t forget to check out Lipoelastic and use code STLpodcast for 10% off your next order. ⁠⁠https://www.instagram.com/lipoelastic_usa/⁠⁠ [https://www.instagram.com/lipoelastic_usa/] ⁠⁠https://www.instagram.com/lipoelastic/⁠⁠ [https://www.instagram.com/lipoelastic/] Dr Kramer's main outlet is on Substack: https://beyondzebras.substack.com/ [https://beyondzebras.substack.com/] https://www.instagram.com/drnicolekramer/ [https://www.instagram.com/drnicolekramer/]

Lisa Duerre on Workplace Advocacy, and Navigating Lipedema Care

Hosts Cindy and Kristy, welcome guest Lisa Duerre, a CEO of  RLD Group a leadership alignment consulting firm, and lipedema advocate. Lisa shares being late-diagnosed in 2022 after losing mobility and using a scooter, learning about lipedema from her stepmom’s research, and rebuilding her health through conservative therapies, including swimming and wheelchair assistance during airport travel. She discusses advocating through storytelling rather than directly labeling others, the benefits and risks of social media, and frustrations with limited access to CLT/CDT/MLD care, long waitlists, and out-of-pocket costs. Lisa recounts a planned Germany surgery canceled due to anesthesia safety concerns tied to BMI and cardio capacity, prompting weight loss and a reassessment of surgery. She emphasizes small actions, community support, requesting help, workplace accommodations, anti-fat bias resources (NAAFA, Aubrey Gordon), and notes research citing a high correlation between lipedema and ADHD.00:00 Welcome to the Show01:39 Meet Lisa Duerre03:09 Late Diagnosis and Mobility05:00 Stepmom Sparks Discovery06:40 How to Tell Others10:57 Social Media and Scams14:02 Surgery Plans Canceled17:34 Getting Diagnosed Locally20:43 Finding MLD and CDT Care24:43 Small Steps and Resilience27:57 Asking Family for Help32:04 Knee Pain Misdiagnosis33:24 Caregiver Perspective Shift34:58 Advocating Travel Needs37:24 Accessibility In Seating41:14 Airline Policies And Bias43:09 Anti Fat Bias Resources45:34 Community And Burnout47:39 Finding Gifts In Diagnosis50:51 ADHD Link And Superpower54:36 Closing And Where To Find Lisa56:18 Episode Wrap Up Follow us on Social media!!! Kristy's Contact information: IG⁠⁠⁠⁠⁠ ⁠⁠⁠ [https://www.instagram.com/sunrisehealingaz?igsh=bnNleGpubHhhdDFr&utm_source=qr]⁠⁠⁠https://www.instagram.com/dellalunawellness/⁠⁠⁠ [https://www.instagram.com/dellalunawellness/] FB Group⁠⁠⁠⁠ ⁠⁠https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr] Website  Kristy Dellacroce, MS,OTR/L, MLD-C ⁠⁠ ⁠⁠Dellalunawellness.com⁠⁠ [http://www.dellalunawellness.com] ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [http://sunrisehealingaz.com/]Lipedema Advocate 856-297-7437 Cindy contact information ⁠FB:⁠⁠⁠ ⁠https://www.facebook.com/withcindyhowell⁠⁠⁠⁠⁠ [https://www.facebook.com/withcindyhowell%E2%81%A0%E2%81%A0] Private FB Group:⁠⁠⁠⁠⁠ ⁠https://www.facebook.com/groups/7021999704562921⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/groups/7021999704562921] IG:⁠⁠⁠⁠⁠ https://www.instagram.com/lipedema_withcindyhowell/⁠⁠⁠ [https://www.instagram.com/withcindyhowell/] Cindy Howell RN, CLT, MPHC Website:⁠ ⁠⁠⁠⁠⁠www.withcindyhowell.com⁠⁠⁠⁠⁠⁠ [www.withcindyhowell.com⁠⁠⁠⁠⁠⁠] Lipedema advocate: 860-550-1161 Top 5 Foods to Avoid for Managing Lipedema! Link:⁠⁠⁠ https://withcindyhowell.com/checklist/⁠⁠⁠ [https://withcindyhowell.com/checklist/] Free surgery course:⁠⁠ ⁠⁠⁠⁠ [https://l.bttr.to/6cATB]⁠⁠https://l.bttr.to/6cATB⁠⁠⁠ [https://l.bttr.to/6cATB%E2%81%A0] https://www.instagram.com/stronger_than_lipedema_podcast/ [https://www.instagram.com/stronger_than_lipedema_podcast/] This episode is proudly sponsored by Lipoelastic Compression Don’t forget to check out Lipoelastic and use code STLpodcast for 10% off your next order. ⁠⁠https://www.instagram.com/lipoelastic_usa/⁠⁠ [https://www.instagram.com/lipoelastic_usa/] ⁠⁠https://www.instagram.com/lipoelastic/⁠⁠ [https://www.instagram.com/lipoelastic/] * LinkedIn: https://www.linkedin.com/in/lisaduerre/ [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Fwww.linkedin.com%2Fin%2Flisaduerre%2F=] * YouTube: https://www.youtube.com/@realtalkwithlisa [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Fwww.youtube.com%2F%40realtalkwithlisa=] * Speaking Page: https://www.lisaduerre.com/lipedema-advocacy/ [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Fwww.lisaduerre.com%2Flipedema-advocacy%2F=] * RLD Group: https://rldgroupllc.com/ [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Frldgroupllc.com%2F=] * Instagram: https://www.instagram.com/lisa.duerre/ [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Fwww.instagram.com%2Flisa.duerre%2F=] * Facebook: https://www.facebook.com/lisa.duerre [https://bixel1.net/v1/t/c/9785483c-70b6-37a6-af28-e1fa7f4bd452/gm%3A09d8f837-70c8-4c50-9f98-524df069e865/Multiple%20Recipients/?https%3A%2F%2Fwww.facebook.com%2Flisa.duerre=]

Carmen from Monarch continuing education: insights into lymphatic health

Understanding the Lymphatic System, MLD, and Early Lipedema Support with Carmen of Monarch Continuing EducationHosts Cindy and Kristy welcome Carmen, director and owner of Monarch Continuing Education, who shares her background in physical therapy and massage therapy and how discovering manual lymph drainage (MLD) led her to become a certified lymphedema therapist and eventually create accredited training programs to expand access to care, especially in rural areas. Carmen explains why lymphatic education isn’t mainstream, gives a simple overview of the lymphatic system’s role in moving and filtering interstitial fluid, and discusses signs of lymphatic issues and early lipedema indicators. She recommends practical ways to support lymphatic health, emphasizing movement, reducing toxins, and tracking habits and symptoms. Carmen clarifies why MLD is light yet effective, its role in maintenance, and shares a multigenerational lipedema case highlighting early intervention benefits. She also provides resources at monarchce.com.00:00 Welcome to the Show00:55 Sponsor Message01:42 Meet Carmen02:02 From Clinician to Educator06:04 Why Lymphatics Are Overlooked10:47 Lymphatic System Explained15:03 Signs of Lymphatic Trouble18:10 Simple At Home Support20:53 Tracking Habits and Symptoms25:34 Manual Lymph Drainage Basics29:42 MLD for Wellness and Fitness34:37 Three Generation Lipedema Story39:59 Resources and Where to Find Carmen41:07 Conference Talk and Progress42:20 Final Thoughts and Goodbye Follow us on Social media!!! Kristy's Contact information: IG⁠⁠⁠⁠⁠ ⁠⁠⁠ [https://www.instagram.com/sunrisehealingaz?igsh=bnNleGpubHhhdDFr&utm_source=qr]⁠⁠⁠https://www.instagram.com/dellalunawellness/⁠⁠⁠ [https://www.instagram.com/dellalunawellness/] FB Group⁠⁠⁠⁠ ⁠⁠https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr] Website  Kristy Dellacroce, MS,OTR/L, MLD-C ⁠⁠ ⁠⁠Dellalunawellness.com⁠⁠ [http://www.dellalunawellness.com] ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [http://sunrisehealingaz.com/]Lipedema Advocate 856-297-7437 Cindy contact information ⁠FB:⁠⁠⁠ ⁠https://www.facebook.com/withcindyhowell⁠⁠⁠⁠⁠ [https://www.facebook.com/withcindyhowell%E2%81%A0%E2%81%A0] Private FB Group:⁠⁠⁠⁠⁠ ⁠https://www.facebook.com/groups/7021999704562921⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/groups/7021999704562921] IG:⁠⁠⁠⁠⁠ https://www.instagram.com/lipedema_withcindyhowell/⁠⁠⁠ [https://www.instagram.com/withcindyhowell/] Cindy Howell RN, CLT, MPHC Website:⁠ ⁠⁠⁠⁠⁠www.withcindyhowell.com⁠⁠⁠⁠⁠⁠ Lipedema advocate: 860-550-1161 Top 5 Foods to Avoid for Managing Lipedema! Link:⁠⁠⁠ https://withcindyhowell.com/checklist/⁠⁠⁠ [https://withcindyhowell.com/checklist/] Free surgery course:⁠⁠ ⁠⁠⁠⁠ [https://l.bttr.to/6cATB]⁠⁠https://l.bttr.to/6cATB⁠⁠⁠ [https://l.bttr.to/6cATB%E2%81%A0] Podcast IG:https://www.instagram.com/stronger_than_lipedema_podcast/ [https://www.instagram.com/stronger_than_lipedema_podcast/] This episode is proudly sponsored by Lipoelastic Compression Don’t forget to check out Lipoelastic and use code STLpodcast for 10% off your next order. ⁠⁠https://www.instagram.com/lipoelastic_usa/⁠⁠ [https://www.instagram.com/lipoelastic_usa/] ⁠⁠https://www.instagram.com/lipoelastic/⁠⁠ [https://www.instagram.com/lipoelastic/] Monarch Continuing Education: https://www.monarchce.com/ [https://www.monarchce.com/] Email: carmen@monarchce.com [carmen@monarchce.com] https://www.facebook.com/MonarchCE/ [https://www.facebook.com/MonarchCE/]

Exploring Innovations in Healthcare with Dr. Grace Villaver

Cindy and Kristy welcome Dr. Grace Villaver from Levelupptdoc.com * 7:45 — Lipedema fat is metabolically different and causes inflammation, muscle inhibition, and joint damage beyond just added weight. Even small amounts of joint swelling can significantly reduce muscle recruitment. * 8:54 — Lipedema fat is metabolically distinct and creates a different kind of inflammation in the body. * 16:24 — Custom compression garments are more effective and improve compliance — especially for patients with asymmetrical body shapes or sensitivity. * 31:59 — Surgery is a valid option for many women — but vetting surgeons and having realistic expectations (including the possibility of deeper nodules becoming more visible post-surgery) is critical. * 43:15 — CDT (Complete Decongestive Therapy) is the gold standard for lipedema management and includes MLD, compression, exercise prescription, and skincare. * 44:52 — Your body is not failing you — it has been failed by a system that wasn't built to understand it. Connect with Dr. Grace Villaver: * Website: levelupptdoc.com [ levelupptdoc.com] * Email: drgrace@levelupptdoc.com * Location: Leesburg, Northern Virginia * https://www.instagram.com/levelup.therapy/ [https://www.instagram.com/levelup.therapy/] Sponsor:This episode is sponsored by Lipoelastic — compression garments designed specifically for patient comfort and support. Use code STLpodcast for 10% off your order. Link in show notes.

Kasi Grosvenor: Insights on Lipedema Awareness Month Lipedema Awareness Month’s focus on "lipedema literacy"

Lipedema Literacy, Surgery Realities, and Trusted Resources with Kasi GrosvenorHosts Cindy and Kristy welcome back Kasi Grosvenor, a project manager at the Lipedema Foundation, to discuss her lipedema journey, the way pain and functional limitations can be normalized, and how functional capacity evaluations may reveal hidden impacts—especially when conducted by clinicians familiar with lipedema. Kasi shares that she was diagnosed about five years ago (stage 2–3), has used conservative therapies since diagnosis, and has undergone five removal-related procedures (including brachioplasty, abdominoplasty, and low-volume liposuction), emphasizing surgery as a reset—not a cure—requiring ongoing daily management. The conversation covers comorbidities (including mast cell activation syndrome, hereditary alpha-tryptasemia, hypermobility, perimenopause), the slow progress toward ICD coding, and Lipedema Awareness Month’s focus on “lipedema literacy,” urging patients to seek vetted resources like lipedema.org, provider directories, print brochures, and the Legato Library.00:00 Welcome to the Podcast00:55 Sponsor Message01:42 Meet Casey Grosvenor02:34 Kasi’s Diagnosis Story04:35 Normalizing Pain and Limits05:30 Functional Capacity Testing10:12 Finding the Right PT or OT14:43 Life After Five Surgeries17:32 What Areas Were Treated19:08 Regrowth and Fibrosis Tools23:14 Habit Stacking at Home26:08 Comorbidities and Connections30:10 Hypermobility and Early Signs31:34 Aging With EDS Challenges32:43 Grassroots Awareness Materials34:44 Billboards And Viral Moments36:27 ICD Codes And Policy Progress41:58 Patient And Foundation Perspective44:26 Awareness Month Literacy Push47:04 Elevator Pitch For Lipedema49:41 Obesity Bias In Healthcare52:49 Trusted Resources And Legato Follow us on Social media!!! Kristy's Contact information: IG⁠⁠⁠⁠⁠ ⁠⁠⁠ [https://www.instagram.com/sunrisehealingaz?igsh=bnNleGpubHhhdDFr&utm_source=qr]⁠⁠⁠https://www.instagram.com/dellalunawellness/⁠⁠⁠ [https://www.instagram.com/dellalunawellness/] FB Group⁠⁠⁠⁠ ⁠⁠https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr] Website  Kristy Dellacroce, MS,OTR/L, MLD-C ⁠⁠ ⁠⁠Dellalunawellness.com⁠⁠ [http://www.dellalunawellness.com] ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [http://sunrisehealingaz.com/]Lipedema Advocate 856-297-7437 Cindy contact information ⁠FB:⁠⁠⁠ ⁠https://www.facebook.com/withcindyhowell⁠⁠⁠⁠⁠ [https://www.facebook.com/withcindyhowell%E2%81%A0%E2%81%A0] Private FB Group:⁠⁠⁠⁠⁠ ⁠https://www.facebook.com/groups/7021999704562921⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/groups/7021999704562921] IG:⁠⁠⁠⁠⁠ https://www.instagram.com/lipedema_withcindyhowell/⁠⁠⁠ [https://www.instagram.com/withcindyhowell/] Cindy Howell RN, CLT, MPHC Website:⁠ ⁠⁠⁠⁠⁠www.withcindyhowell.com⁠⁠⁠⁠⁠⁠ Lipedema advocate: 860-550-1161 Top 5 Foods to Avoid for Managing Lipedema! Link:⁠⁠⁠ https://withcindyhowell.com/checklist/⁠⁠⁠ [https://withcindyhowell.com/checklist/] Free surgery course:⁠⁠ ⁠⁠⁠⁠ [https://l.bttr.to/6cATB]⁠⁠https://l.bttr.to/6cATB⁠⁠⁠ [https://l.bttr.to/6cATB%E2%81%A0] This episode is proudly sponsored by Lipoelastic Compression Don’t forget to check out Lipoelastic and use code STLpodcast for 10% off your next order. ⁠⁠https://www.instagram.com/lipoelastic_usa/⁠⁠ [https://www.instagram.com/lipoelastic_usa/] ⁠⁠https://www.instagram.com/lipoelastic/⁠⁠ [https://www.instagram.com/lipoelastic/] Lipedema Foundation Website: https://www.lipedema.org [https://www.lipedema.org/?utm_source=chatgpt.com] * Access Lipedema Awareness Month Resources: https://www.lipedema.org/lipedema-awareness-month-2026 [https://www.lipedema.org/lipedema-awareness-month-2026] * Join the Lipedema Foundation Newsletter: https://lipedema.org/contact-us [https://lipedema.org/contact-us]  * Educational Resources: https://www.lipedema.org/educational-resources [https://www.lipedema.org/educational-resources] * Follow Lipedema Foundation on Social Media:  Facebook [https://www.facebook.com/Lipedema/], LinkedIn [https://www.linkedin.com/company/lipedema-foundation/], Instagram [https://www.instagram.com/lipedema_fndn/], X [https://www.instagram.com/lipedema_fndn/], TikTok [https://www.tiktok.com/@lipedema_foundation], and YouTube [https://www.youtube.com/channel/UCvpjYrsAUGB0-evCNqsSrGA] * Explore the Lipedema Research Library (LEGATO): https://www.lipedema.org/library [https://www.lipedema.org/library] * Access Treatments Resources: https://www.lipedema.org/treatments [https://www.lipedema.org/treatments] * Find a Lipedema Provider: https://www.lipedema.org/provider-directory [https://www.lipedema.org/provider-directory]  Kasi Grosvenor https://www.instagram.com/kasi.grosvenor/ [https://www.instagram.com/kasi.grosvenor/] https://www.instagram.com/thrivingwithlipedema/