Frequently Asked Questions about Lipedema

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Understanding the Fat Storage Disease, Lipedema

Lipedema is a disease that affects 11% of the female population — 17 million in the U.S. and 370 million women worldwide. Yet lipedema continues to be tragically misunderstood and misdiagnosed. The problem is that many physicians still misdiagnose this disfiguring disease as simple obesity, but lipedema doesn’t respond to diets or exercise. The typical symptoms occur when fat begins to accumulate beneath your skin in an irregular way, typically in the buttocks, thighs, and calves.  Most women develop a large lower half and wide, column-like legs.  For example, the top half of your body may be a size 8, while your bottom half is a size 18 or larger. As the disease progresses, the fat can begin to accumulate in your arms and abdomen. 

Lipedema should not be ignored! Not only is it a cosmetic concern, but as it progresses it can lead to physical problems such as frequent bruising, discomfort, pain, loss of mobility, and can progress to permanent lymphatic damage.

What's the Difference between Lipedema vs Lymphedema?

Lipedema is a disease misunderstood and misdiagnosed by many practitioners.  If you’re like many women, you may have been mistakenly diagnosed with lymphedema. What is the difference between lymphedema and lipedema? While these two disorders can appear similar, their root causes are quite different. Lipedema is an abnormal accumulation of excess fat, swelling, and fibrosis under the skin, while lymphedema is damage of the vessels of the lymphatic system. This leads to a buildup of tissue fluids, swelling, and scar tissue (fibrosis).  Lipedema is also painful to the touch with frequent bruising, which doesn’t occur with lymphedema. 

There are also physical differences between the two — lipedema typically affects both legs with a near symmetrical, column-like appearance.  Lymphedema will typically affect just one leg.  If it affects both legs, the swelling will be asymmetric – one leg larger than the other.

Medical Management

of Lipedema

In many cases, the progression of lipedema can be slowed by compression therapy and adapting a diet that is respectful of lipedema. However, Dr. Amron stresses that these therapies often have little effect on reversing the disease.

Some of the treatments are designed to improve the flow and drainage of fluid in your tissues, such as:

Manual Lymphatic Drainage (MLD)

These techniques help to encourage the flow of fluid through your body.

Compression Decongestive Therapy (CDT)

The patient wears tight-fitting bandages or garments that squeeze the affected limbs.

Lipedema Resources

& Research

For additional information about Lipedema:

Lipedema Society®

A Philanthropic Medical Society and Lipedema Resource & Network Advancing Lipedema Awareness and Education

Lippy Logic™ Educational Series

Lippy Logic is an educational encyclopedic YouTube series for Lipedema patients, with the goal of spreading awareness and understanding to both patients and medical professionals. Subscribe to stay updated with regular future episodes and Community Q&As.

FAT DISORDERS RESEARCH SOCIETY

The Fat Disorders Research Society (FDRS) was founded in 2009 by Sue Grimshaw, Susan Smith and Carole Reed to promote research, increase public awareness, and provide information and resources for individuals with fat disorders. Learn more about the FDRS

Patient Guidance and Insurance Facebook Group

Join potential, current, and past patients of ALT in a welcoming and supportive Facebook Group. Here you'll find women sharing their experiences and helping others; an excellent resource to get your Lipedema-related questions answered fast!

Liposculpture and Lipedema Surgery: A Guide for the Patient and Pearls for the Surgeon

At the heart of this comprehensive book is Dr. Amron's philosophy—a balanced approach tailored to both patients and surgeons. Patients will learn how to make confident, well-informed decisions about their treatment options while fostering collaborative relationships with skilled physicians.

The Lipedema Foundation

The Lipedema Foundation supports collaborative research that addresses the basic biology, genetics, and epidemiology of Lipedema.

THE LIPEDEMA PROJECT

The Lipedema Project is a collaborative partnership between the Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel and Lipedema Simplified, LLC. The Lipedema Project is a comprehensive transmedia program working to increase awareness and provide education, research and treatment for lipedema.

Lippy Q's

Your lipedema questions answered! Follow along for quick and easy answers to questions from our community of lipedema patients covering common concerns to before, during, and after surgery tips. A little bit of knowledge can go a long way!

TALK LIPEDEMA

UK based lipedema organization that provides advocacy and support for lipedema patients. Also hosts of lipedema conferences and workshops.

LIPEDEMA SIMPLIFIED

Provides blogs, resources, research and information to women in the lipedema community

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