Lipedema is a chronic, progressive disease which occurs almost exclusively in women; there have been a few cases diagnosed in males, but overall lipedema is very rare in men. There is little known about the disease, and there is no cure. Treatment focuses on attempting to suppress further development of the diseased tissue.
Although first described in 1940 by Drs. Allen and Hines of the Mayo Clinic, many physicians remain unaware of lipedema or its symptoms and assume its appearance to be obesity in women; this misdiagnosis and/or nonrecognition delays diagnosis and treatment for decades and results in the patient being blamed for “being fat.”
Lipedema (also known as lipoedema, lipoedem, and lipodem) is a chronic, progressive disease of fibrotic loose connective (adipose) tissue which occurs in the lower abdomen, hips, buttocks, legs and/or arms bilaterally and sparing the trunk, hands, and feet. A hallmark of lipedema tissue is inflammation, resulting in tissue swelling, nodules, fibrosis and pain. Patients with lipedema find that the legs swell and ache upon standing/walking for long periods of time. The nodules which develop are hardly affected by either diet or exercise and can only be removed by special lymph-sparing surgery, which is not routinely covered by insurance, nor does most insurance cover the compression garments which are critical to postoperative care and life-long treatment of lipedema. Insurance carriers also do not offer coverage for the many supplements taken to try to control advancement of the disease.
Lipedema presents as symmetrical accumulation of deposits of painful fat in subcutaneous tissue that disproportionately affects the lower limbs, anywhere from buttocks to ankles, although there are several places where it develops, and these are termed the “types” of lipedema (see below). The legs feel heavy and are usually very sensitive and painful to touch and also prone to easy bruising, as the capillaries “leak” due to fragile blood vessels. In about a third of women, the arms can also accumulate distinct patterns of fatty tissue. A genetic component to the disease is suspected, and development can occur at times of hormone changes in women: puberty, hysterectomy, menopause. Lipedema causes gait and joint abnormalities and eventually can result in the development of lymphedema, called lipo-lymphedema.
Until a few years ago, there was no research being done of lipedema, and 80 years later, many physicians still do not recognized it and generally misdiagnose it as simple obesity or even lymphedema. It is only recently that interest and education about lipedema has been gaining awareness, even though it is estimated that 11% of women have the disease. Many patients in the lipedema community have suffered greatly due to a lack of awareness – even now, many remain undiagnosed, receiving no treatment until they have progressed to advanced stages, when mobility is affected due to the location and weight of the lipomas, both of which create joint deformities in the lower limbs and an abnormal gait over time.
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Symptoms of Lipedema
Stages of Lipedema
Lipedema is categorized in stages by levels of development. These classifications include skin surface and the amount of loose connective tissue present. Lipedema tissue (and therefore body mass index), lymphedema, metabolic disease and lymphedema increase with stage.
Stage I – Skin surface is normal. Subdermal nodules due to underlying loose connective tissue fibrosis are present.
Stage II – Skin surface is uneven, and dimpling is present due to progressed fibrotic changes and excess tissue. Palpable nodules may be more numerous and larger. In arms, tissue begins to hang off the arm, those patients with full arm involvement show a more pronounced wrist cuff.
Stage III – There is lobular deformation of skin. There are numerous large subdermal nodules and deformities of overhanging lobules of increased lipedema tissue which is more fibrotic in texture.
Types of Lipedema
Lipedema is also categorized by the distribution of SAT, which is termed the Schingale classification.
Type I – Involves buttocks and hips (saddle bag or jodhpur phenomenon)
Type II – Involves buttocks to knees, with formation of folds of fat around the inner side of the knees
Type III – Involves buttocks to ankles
Type IV – Involves arms
Type V – Involves lower legs
To learn more about types of lipedema, see Stages and Types of Lipedema by Dr. Thomas Wright.
Herbst, K., et al. (2021). Standard of care for lipedema in the United States. Phlebology, 36(10), 779–796.
New Patient Folder
New to lipedema? The Fat Disorders Resource Society has designed a lipedema folder for the newly diagnosed patient. This folder highlights the various treatments for lipedema and is perfect for doctors and therapists to provide to their patients. FDRS asks for a donation of $4 to cover the cost of printing the folder, shipping, and handling.
More About Lipedema
Diagnosing Lipedema – Lipedema Foundation
Differences Between Lipedema and Lymphedema – Lymphedema Blog
Genetic and Rare Diseases Information Center: Lipedema – National Institutes of Health
Identifying Fibrosis in Every Stage of Lymphedema – Lymphatic Network
Introduction to Lipedema – Dr. Thomas Wright
Ladies, Here’s What You Should Know About Lipedema, a Condition That Causes Excess Fat in the Legs – Cleveland Clinic
Lipedema: A Devastating Disease Too Often Overlooked – Dr. Thomas Wright
Lipedema: Diagnosis, Causes, and Types – Medical News Today
Lipedema Explained – Total Lipedema Care
Lipedema or Cellulite? How to Tell the Difference – Healthline
Insights on the Pathophysiology, Diagnosis and Treatment of Lipedema – Dr. Karen Herbst
Lymphedema and Lipedema – Indications, Contraindications and Risk Factors PDF – 2018 Michigan Occupational Therapy Association Annual Conference
Patient Guide to Self-Diagnosing Lipedema – Toronto Physiotherapy
Symptom Management Guidelines: Lymphedema – British Columbia Provincial Health Services Authority
Understanding Fibrosis in Lipedema: Inflamed Subcutaneous Adipose Tissue and Nodules – Lymphatic Network
What is Lipedema? – Center for Vascular Medicine
What is Lipedema? All About the Fat That’s Not Your Fault – Carolina Vein Center
Where Does Lipedema Fat Accumulate? – Dr. Thomas Wright