Lipedema Resources
This page is a living document, sharing resources that might help us all.
Last update: 5/13/22
Google can be a great friend. Be sure and search on any search engine (including inside the social media sites) for the word, “Lipedema,” and the word, “Lipoedema.” Other parts of the world spell it differently and there is excellent content coming in from the UK, Australia, Canada, and the US. For any new cure, double check your resources and make sure there are research papers behind it, especially before you put any supplements into your body. I mean it.
Books:
If you search Amazon for the word Lipedema in Books, you should see a little more than 70 books available (Jeans on a Beach Day is one of them!). Keep searching! We want more and more books on the topic to come out. If you’re inclined to share your story, PLEASE, consider writing a book!
Documents:
The Standard of Care for Lipedema in the United States (2021). Hands down the most important resource we need. We should read it and provide it to any medical professional working with us.
Lipedema Brochure, courtesy of the Lipedema Foundation. They will also mail you copies!
Information Leaflet from the Lipedema Project (28 pgs)
Podcasts:
- Lipedema Toolbox
- Living Well with Lipedema
- Spotlight Lipedema on Apple Podcasts
- Doctor-Patient Connection Podcast (Lipedema Project)
Registries of Lipedema Providers:
- The Lipedema Project has a Provider Directory online, which shows all kinds of providers, but I see some CLTs (Certified Lymphedema Therapists) on their list.
- The American Lymphedema Framework Project (ALFP) provides a search directory to locate trained specialists in lymphedema management. These therapists are generally trained in lipedema as well and can be very helpful for both diagnosis and treatment.
- Curelipedema.org has a small registry that surely (hopefully) represents a very small subset of therapists who have shared their information on their MLD Directory.
Websites:
Fat Discorders Resource Sociaty: They host a huge annual conference where research is shared and patients are part of the community with each other and clinicians supporting them. Wonderful, wonderful!
Lipedema.com: This is an up and coming website with information that is populating at a crazy rate. It is managed by leading researchers who are involved in all things lipedema, including Chuck Erlich, who wrote the Lymphedema and Lipedema Nutrition Guide.
Lipedema Simplified: Founded by Catherine Seo, who is a lipedema patient and an amazing filmmaker. She has a video that struck me right in the heart called – The Disease They Call FAT, that is a must-watch.
Lipedema Treatment Guide (Kathleen Lisson) – There’s a book, a website, and all kinds of social medias (esp. the YouTubes!) written by a board certified therapeutic massage therapist, and certified lymphedema therapist. She is very active in social media and continually spends her life to make the lives of patients better. Follow anything Kathleen does!
Social Media Influencers:
There are a handful of social media influencers focused on spreading awareness and treatments of lipedema (myself included – @legslikemine).
Check all the sites because we post different information in different media. Names I’d immediately suggest are @palegingerpear and @curvygirlbeth on all the media feeds. Again, if you search on both “lipedema,” and “lipoedema,” you’ll find more information that you could ever wade through.
