Lipedema Resources For You!
Register for research, gain more knowledge, and find community with others
Hey Everyone,
I’ve developed this resource page for you. These are sites I’ve searched and used for myself and to get information for my writing. I will continue to update you on subsequent posts as I find more information.
Do You Have Lipedema? Take this Quiz
The Lipedema Project has a wealth of information. Their home page has a multiple-choice quiz that takes you through the signs and symptoms of Lipedema. It’s a sort of basic clinical assessment you can do on your own. In the end, it will ask for your email and send you the results.
Standard of Care for Lipedema: Use this as a guide for treatment
The Standard of Care was first published on May 28th, 2021. This is the approved and recommended treatment for Lipedema. The SOC is a huge step toward getting insurance to recognize Lipedema as an actual disease and for women to get insurance coverage for treatment, especially liposuction surgery.
Lipedema Foundation Registry: Get registered for ongoing research
The Lipedema Foundation’s mission is to define, diagnose, and develop Treatments for Lipedema. LFR supports collaborative research that addresses the basic biology, genetics, and epidemiology of Lipedema. This link is consent to join the Foundation’s registry to help them by participating in advancing their research.
Find a Lipedema Specialist: A list and map of specialists around the World
One of the more difficult parts of Lipedema is finding physicians able to work with you on your lipedema diagnosis. This site gives you a map showing specialists around the world, geotagged where they are, and color-coded for doctors, surgeons, and ancillary specialists for conservative care.
Fat Disorders Resouce Society: Learn more about Lipedema and spread awareness
This not-for-profit organization is a staple in the Lipedema community. They have tons of info and resources, a summit once a year (the next one is in April 2023), and you can even order informational brochures free of charge about Lipedema and Dercum’s. I ordered some for my PCP and physical therapist offices.
Join this Lipedema Community: Be a part of this site and help crowdsource Lipedema treatment.
Stuff That Works is a unique site where people with chronic conditions give input on their personal experiences with their disease. They are building the biggest patient-reported knowledge base for every chronic condition. If you join, you can answer questions, take quizzes, and learn the most effective ways—from patient experience—to manage your condition.
LymphaPress Round Table
This meets once a month and has patients, doctors, Physical therapists, and caregivers, and is open to anyone. The past Round Tables are also available to view. They are also willing to ask for topics to cover. Cleveland Clinic
Cleveland Clinic
Article: heres-what-you-should-know-about-lipedema-a-condition-that-causes-excess-fat-in-the-legs/ The article also shares online groups for support like LipeLadies and resources.
I’ll send you more information as I continue to write more about our condition!