Lipedema Education Group

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The Lipedema Education Group (LEG) is working to develop and share lipedema, lymphedema, and Dercum’s Disease specific educational content and courses for health care professionals, people with these conditions, and caregivers.

Mission

Help to improve the quality of life for people with lipedema, lymphedema, or Dercums’ Disease by providing education that supports early and accurate diagnosis, evidence-based treatments, and effective home care.

Background

LEG is a multidisciplinary team developing lipedema, lymphedema, and Dercum’s Disease specific educational content and courses for medical professionals and consumers. Team members include health care professionals, researchers, writers, and patient advocates (see the list below). LEG was organized in 2022 by members of the US Standard of Care for Lipedema committee formed in 2019.

The LEG process includes reviews by multiple team members to assure both medical accuracy and document usability. Most work is online with weekly Zoom calls, documented by notes, and e-mail collaboration. LEG members also lead interest/project groups, see Groups/Projects.

We are developing best practice guidelines for medical professionals. Our plans include publishing these in medical journals that are appropriate for each audience, indexed in Pub Med, and offer free full text. Readers will also be guided to these publications via www.Lipedema.com, social media and mass media.

Medical professionals, researchers, and writers may Request to Join LEG. Patients and others can receive updates on LEG projects and invitations to participate in polls or reviews by joining the LEG Collaborators Group.

Current Projects Include

  • Lipedema Treatment in Young People Best Practice Guide for medical professionals, to be followed by coordinated guides for parents and children. See the Lipedema in Young People group for more information.

  • Non-surgical Lipedema Reduction Case Report documenting how one of our members lost 30 pounds of lipedema fat without surgery or exercise. We are also helping others make similar changes--while keeping better records--as part of the Stage 1 Interest Group.

  • Lipedema Pump Usage Best Practice Guide to document best practices for pump usage as part of lipedema home-care including routine use and post-surgery care with versions for health care professionals and consumers. See Lipedema Pump Group.

  • Overcoming 2e Project to create an updated psychological guide for people with lipedema, lymphedema, or Dercum's including content from Overcoming the Emotional Challenges of Lymphedema by Elizabeth McMahon, PhD. See [xref Overcoming 2e Project for information on participating in this project.

  • Lipedema Ultrasound Best Practice Guide for medical professionals explains how to use ultrasound to support diagnosis and assessment of lipedema, lymphedema, and Dercum's Disease.

  • Lipedema Data Collection Best Practice Guide for use by consumers for self-care tracking and in our best practice guides. Includes lab tests for hormones, routine labs, body measurements, medications, supplements, self-care, etc.

  • Answers to additional Frequently Asked Questions including Vaginal Estrogen Supplements, Anti-Obesity Medications, Preparing for Orthopedic Surgery, and Compression Following Lipedema Reduction Surgery.

Group Members

Sara Al-Ghadban, PhD, Research Scientist, University of North Texas Health Science Center. 

Polly Armour, BS, lipedema patient and advocate, Executive Assistant, Stutz Lipedema Services LLC. 

Karen Ashforth, MS, OTR, CLT-LANA. St Joseph's Medical Center Lymphedema Clinic, Stockton, California; Private Practice Lymphedema and Lipedema Education, Research and Consulting; adjunct professor University of the Pacific Doctoral Physical Therapy Program, www.karenashforth.com.

Clarissa Chan, DO, Resident Physician, Transitional Year at St. Joseph’s Medical Center; specializing in Physical Medicine and Rehabilitation

Margarita Correa, MD, CLT, Board-Certified, Physical Medicine & Rehabilitation; lipedema and lymphedema physician.

Noah Danesh, BA, Lipedema Research Coordinator at Total Lipedema Care.

Steven Dean, DO, MSVM, RPVI, Director, Vascular Medicine Program, Director, Cardiovascular Medicine’s Noninvasive Peripheral Vascular Laboratory; professor of clinical medicine at The Ohio State University Wexner Medical Center.

Paula M. Donahue, DPT, MBA, CLT-LANA, Assistant Professor, Physical Medicine and Rehabilitation, Physical Therapist Level IV, Vanderbilt Dayani Center for Health & Wellness 

Chuck Ehrlich, MS, MBA, Lipedema Education Group leader, SOC Committee Member, lead author of the “Lymphedema and Lipedema Nutrition Guide” and researcher, writer and publisher for Lymph Notes.

Tami Faris, OTR/L, CLT-LANA, specializing in the treatment of lymphedema and lipedema in the Kansas City area. 

Lisa Fiedler, MSW, Lipedema patient and advocate; shares resources and encouragement for other lipedema patients at instagram.com/everydaylipedema.

Ruth Fischer, nutrition, wellness, and life skills educator.

LaDonna Gabrielson, lipedema patient and advocate. 

Kasi Grosvenor, MBA, Lipedema patient and advocate seeking to encourage others to thrive with Lipedema by promoting conservative therapies and lifestyle changes to manage the condition. Follow Kasi's outreach on LinkedIn, Blog, and Instagram.

Brenda Hardie, MD, family practitioner in British Columbia.

Laura Harmacek, Program Officer for Scientific Programs at the Lipedema Foundation providing grant funding to researchers in the Lipedema space.

Karen L. Herbst, MD, PhD, Associate Professor and Director of the TREAT Program, College of Medicine, University of Arizona; Board-Certified Endocrinology

Emily Iker, MD, Physical Medicine and Rehabilitation Specialist; Director of Lymphedema Center in Santa Monica.

Linda-Anne Kahn, CMT, CLT-LANA, CHNC, Director & Founder Lymphatic Therapy Services of San Diego (www.LymphaticTherapyServices.com); frequent speaker on lipedema; co-author “Lymphedema and Lipedema Nutrition Guide.”  

Jonathan Kartt, Chief Executive Officer, Lipedema Foundation.

Marti Klein, NBC-HWC, board-certified health and wellness coach specializing in lipedema and lymphedema at Flourish! Health and Wellness Coaching.

Ethan Larson, MD, Board-Certified plastic surgeon specializing in aesthetic lipedema reduction surgery; worked with Dr. Herbst for years providing samples from women with lipedema to Dr. Herbst’s TREAT Program. 

Jacqueline Larson, MS, RDN, Registered Dietitian Nutritionist and lipedema patient, Newport Beach, CA. Organizer of the Lipedema Dietitian Facebook Group.

Cristina Lella, Lipedema patient and awareness advocate.

Kathleen Lisson, CMT, CLT, Solace Massage and Mindfulness, San Diego. Author of “Mindful Strategies for Adult Clients with Adverse Childhood Experiences: a resource for mind/body professionals” (Solace Massage & Mindfulness, 2022) and several other books.

Adrien MacKenzie PTA, LMT, CLT-LANA, Adie MacKenzie Healing Arts, Nashville, TN; Clinical Advisor to AIROS Medical, a pneumatic pump company; National Board Certified Health and Wellness Coach serving Lymphedema and Lipedema clients.

Courtney Henderson Mascio, OT/L, CLT, Professional Education Manager at Lipedema Foundation and Certified Lymphedema Therapist.

Lindy McHutchison, MD, Phlebologist and Medical Director, Carolina Vein Center, Durham, North Carolina; Board Certified in Obstetrics and Gynecology. 

Janis Miller, OT, CLT-LANA, Olathe Health, Olathe, KS, USA 

Camille Morrison, PT, CLT, Senior Physical Therapist, Rehab Services, MD Anderson in The Woodlands, Conroe, TX

Bonnie Newlin, MS, RD, LDN, Certified LEAP Therapist, Founder and CEO of Crave Nourishment www.Cravenourishment.com  

Bethanie (Beth) Noll, MOT, OTR/L, CLT, Occupational Therapist, Certified Lymphedema Specialist, Clinical Specialist for SIGVARIS Group USA.

Susan O'Hara, patient advocate, social media entrepreneur (legslikemine.com), and author of “Jeans on a Beach Day” (KDP, 2022).

Nicholas Pennings, DO, ABOM, FOMA, FACOFP, FAAFP; Chair, Family Medicine, Jerry M. Wallace School of Osteopathic Medicine; Director, Campbell University Health Center; Board-certified with fellowship designation in Family and Obesity Medicine; Executive Director of Clinical Education, Obesity Medicine Association.

Stephanie Peterson, Data Manager, Lipedema Foundation

Beth Rylaarsdam, Motivational Speaker, Model , Mentor & CEO/Founder  www.thecurvygirlbeth.com.  A lipedema awareness advocate and patient focusing on fashion/health/wellness marketing while representing the curvy woman worldwide across social media.

Jaime Schwartz, MD, FACS, Board-certified Plastic Surgery.

Michael Schwartz, MD, Board certified, Facial Plastic and Reconstructive Surgery and Otolaryngology; Diplomate, American Board of Cosmetic Surgery. 

Nadiv Shapira, MD. First State Lipedema.

Molly Sleigh, OTD, OTR/L, CLT-LANA, Adjunct Professor, Rocky Mountain University; Doctor of Occupational Therapy; Certified Lymphedema Therapist.

Joshua Trock, PT, DPT, CLT-LANA, Medical Vein Clinic in San Antonio, Texas. 

Edely Wallace, E-RYT, CYT, CDT, MLD, MT, Lymphatic Yoga Instructor.

Zach Ward, DO, Resident Physician, Transitional Year at St. Joseph’s Medical Center; specializing in Physical Medicine and Rehabilitation

Thomas C. Wright, MD, FACP, Board Certified Phlebologist, Cosmetic Surgeon and Dermatologist, Medical Director Laser Lipo and Vein Center; cares for women with lipedema and donates samples to Dr. Herbst’s TREAT program.

Boris Volshteyn, MD.