Though first described by Allen and Hines at the Mayo Clinic over 80 years ago, lipedema is an uncommonly diagnosed disease. Generations of women have gone their whole lives thinking that there was no treatment for their ‘heavy legs.’ With the advent of social media, people with lipedema are sharing photos and offering support and information to one another. Though awareness of lipedema has increased over the past decade, America hasn’t had a formal Standard of Care for the disease - until now!

The Standard of Care for Lipedema in the United States was published in the December 2021 edition of the peer-reviewed medical journal Phlebology. This Standard of Care Document was created by a multidisciplinary team of lipedema experts, including vascular and plastic surgeons and certified lymphedema therapists, who met at the Fat Disorders Resource Society Annual Meeting in 2019. This clinical practice guideline features 85 consensus statements and is available in full-text format free of charge to healthcare providers, patients, researchers and the public.

As one of the co-authors of the Standard of Care for Lipedema in the United States, I’d like to share my highlights from the document:

What is lipedema? Lipedema is a loose connective tissue (LCT) disease - this condition is not just about ‘a little extra fat’ around the hips and legs.

When do lipedema symptoms begin? “A trigger for the development of lipedema tissue may be an increase in fluid and connective tissue remodeling that occurs alongside body changes during puberty, childbirth, menopause, stress associated with lifestyle change, or by altering tissue structure after surgery or trauma.”

What is happening in the body? “A hallmark of lipedema tissue is inflammation resulting in tissue fibrosis and pain” and “a microangiopathy of blood and lymphatic vessels underlies lipedema pathology. Lipedema LCT can have capillary fragility and livedo reticularis and are prone to easy bruising. Increased numbers of dilated micro-blood vessels in lipedema contribute excess fluid to the extracellular matrix.”

What are some of the side effects of lipedema? “Lipedema and its concomitant pain and inability to lose tissue mass by usual measures can increase the incidence of depression, anxiety, or eating disorders. Eighty-five percent of women state lipedema affects their mental health, coping abilities and self-esteem. Early diagnosis and treatment may mitigate the impact of lipedema on mental health.”

How can patients with a lipedema diagnosis prepare for surgery? “Women with lipedema should be treated with conservative therapy prior to lipedema reduction therapy” and “in the weeks before surgery, a certified lymphedema therapist can perform a pre-surgical screening to guide “prehab” exercise, perform manual therapies and recommend compression garments for the patient”

The Tactile Medical Venous and Lymphatic Journal Club December 2021 video features Standard of Care for Lipedema in the United States co-author Dr. Steven Dean sharing some highlights from the document. Watch the video here: https://youtu.be/Lt4_QdcCI-0?t=97

Find the Standard of Care for Lipedema in the United States here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8652358/

Author: Kathleen Lisson holds a Bachelors of Applied Science degree in Massage Therapy, is board certified in therapeutic massage and bodywork and is a Certified Lymphedema Therapist. She is also an ACE certified health coach and MMI certified meditation teacher. She has spoken at the American Venous and Lymphatic Society (AVLS), Fat Disorders Resource Society (FDRS), MLD UK, and National Lymphedema Network (NLN) conferences. She is the author of Swollen, Bloated and Puffy and Lipedema Treatment Guide.

Standard of Care for Lipedema in the United States by Kathleen Lisson