Lipedema Support For Patients and Caregivers
About Lipedema
Lipedema is a chronic medical condition that primarily affects women. It is characterized by a symmetrical buildup of often-painful adipose tissue in the legs, and sometimes the arms and lower trunk (hips, buttocks, and abdomen).
Patients often report pain, tenderness, and heaviness in affected areas. Lipedema tissue is typically resistant to nutritional interventions, elevation, diuretics or bariatric surgery, compared with obesity-related fat tissue. In Lipedema, the feet/hands are typically spared, presenting with a raised ridge or fold of fat, possibly a “cuff” at wrists and ankles
Many people experience some amount of swelling (non-pitting edema) in affected areas. However, when the Stemmer sign test is performed, many Lipedema patients present with a “negative” sign, as Lipedema does not usually affect the hands or feet. This also leads to the appearance of a “cuff” at the wrists or ankles.
Diagnosis is currently reached through a clinical exam, which consists of a patient history and physical examination. Differentiation between Lipedema and venous disease, generalized obesity, lymphedema, and Dercum's Disease is important. Check out our Educational Videos & Media page for more information.
Diagnosis
Lipedema requires a clinical diagnosis, meaning there is not yet a standardized test such as bloodwork or imaging that can confirm the presence of Lipedema. Diagnosis should be reached in the context of a thorough patient history and physical exam. See more about how a diagnosis is reached on our Diagnosing Lipedema page, and access the Finding a Lipedema Specialist resource to learn more about building a Lipedema care team.
Treatments
While there is currently no cure for Lipedema, there are various care and Lipedema treatment options available that can effectively manage symptoms and improve the quality of life for patients. It is important to recognize that Lipedema affects each individual differently. Access the Treating Lipedema page to see a wide range of treatment ideas that can be customized to meet patients' specific needs.
It is recommended that patients start slowly by selecting one therapy and assessing its impact on their body, gradually incorporating additional options that align with their schedule and lifestyle. It is important to understand that not every treatment will be suitable for every patient. By starting slowly and incorporating one therapy at a time, a patient can discontinue a therapy quickly if it causes any negative impacts. Many patients find that engaging in some form of treatment on a daily basis is a crucial factor in a successful treatment regimen.
Before starting or stopping any therapy or treatment, patients should consult with their healthcare provider. Individual medical needs and conditions vary, and certain treatments may have contraindications for individuals with Lipedema and/or other health conditions. Only a qualified healthcare professional can provide personalized recommendations and guidance. The information here should not be used as a substitute for professional medical advice, diagnosis, or treatment.
The goals of treatment are: Manage Inflammation, Reduce Fibrosis, Decrease Adipose Tissue, Improve Lymphatic Flow, Increase Mobility, Minimize Fatigue, Manage Pain, Prioritize Emotional and Mental Health, and Promote Overall Health. Learn more about Lipedema treatment.
To find a therapist who specializes in Lipedema treatment, check out the LF Provider Directory. If you are interested in learning more about the various specialities who support Lipedema care, review our Finding a Specialist page.
Tools to get Started
Due to limited staff, LF does not directly support patients - we focus where we can make a difference today - funding research and creating patient resources. We encourage patients and caregivers to check out our Resources page, specifcally the LF Patient Bill of Rights and the LF Patient Self-Advocacy Guide.
We also encourage patients and caregivers to view FDRS Videos, and join theFDRS Facebook page and theLF Facebook page.
A Note for Caregivers
It can be difficult for someone who does not have Lipedema to understand what a person with Lipedema is going through. Lipedema fat tissue can hurt, and it can hurt a lot. The unknowns of the disease are stressful. There are few treatments backed by research. The threat of loss of mobility is terrifying. Encourage your loved ones to seek medical and emotional help and to join a Facebook group with a vibe they enjoy.
About the Lipedema Foundation
The Lipedema Foundation aims to define, diagnose, and develop treatments for Lipedema and is the largest funder of Lipedema research. Our work focuses on understanding the biology of Lipedema and improving diagnosis. We have provided $12.5 million in research funding, supported projects globally, and established the LF patient registry with over 4,096 participants. We also work to increase awareness through educational materials, conferences, social media outreach, and healthcare provider education.