Knowledge is power, and when it comes to managing Lipedema, it’s a very good idea to know what you’re dealing with and how to treat and manage it so you can truly live your best life.
We will continue to add to this page as we find valuable resources, but in the meanwhile, the websites and links below lead to a wealth of knowledge to get you started. Enjoy.
Education & Information
The Lipedema Standard of Care is the official expert outline on what lipedema is, symptoms, stages, how it’s treated, and more. 21 experts met and drafted this over a 2-year period and submitted it to the NIH and the CDC. There is a link to see the pdf and even download it so patients can keep it on their phone or print it out. Patients can share with their doctors and healthcare team so that everyone is on the same page, and so that lipedema patients can get the treatment they need to reduce the progression of this condition. It may also be useful in getting insurance coverage for various treatment options and equipment. You can read the summary at PubMed here.
The Lipedema Foundation is an amazing wealth of information. You can also “register” and help provide information on your personal Lipedema experience. This non-profit funds scientific studies and research for Lipedema. They also have informational brochures you can order to give to your physician or others to educate them.
The Fat Disorder Research Society is a great group that has not just a mission of education, but also research. Each year they host a conference where experts in the areas of fat disorders come together with patients and discuss the most cutting edge information, treatment options, and more. It’s a definite must to attend.
Dr. Karen Herbst is considered to be one of the world’s leading authorities on lipedema. She is an Endocrinologist and for sure our strongest advocate anywhere ever. She has a website loaded with sciency stuff and resources.
In fact, just watch this video below. It’s 1.5 hours of absolute GOLD.
Interview with Dr. Karen Herbst June 2020 This is my favorite and super current informational webinar with Dr. Karen Herbst. She goes over the key treatment methods that each one of us can do to improve our lipedema with an hour-long Q & A that blew my mind. She covered things I’d never heard of before and corrected earlier false dogma on treating lipedema. Did I mention it’s GOLD???
Science Studies & Articles
This is our credibility. You will likely encounter physicians who do not know anything about Lipedema. This is where you can show off your sciency side (after you understand this better).
Note: The websites above have TONS of creditable information too.
Lipedema Standard of Care (the definitive expert document on lipedema)
Lipedema Specialists and Doctors
The Lipedema Project Physician Locator has a database of physicians who treat lipedema globally. It’s not 100% current, but it’s pretty extensive.
Total Lipedema Care is where you can find Dr. Karen Herbst these days. It’s also Co-Directed by Dr. Jaime Schwartz who is a Board Certified Plastic Surgeon and lipedema specialist located in Beverly Hills, CA. He’s very down to Earth and provides virtual and in-person initial consultations and diagnosis. I’ve seen him myself, and have friends who have been cared for by him.
Quadrivas Therapy Lipedema Treatment, Netherlands provides a method of deep tissue massage which has some remarkable results on improving and possibly reversing lipedema. Watch the 10-minute video of a Quadrivas Therapy Study on Lipedema here (presented by Dr. Herbst)
You can also join any of the Lipedema Facebook Groups detailed below and see if there are any mentions of doctors in your area or introduce yourself and ask if anyone knows of a doctor in your area. Our members are from all over the world and there’s no reason we can’t help each other.
Lipedema Patient Roundtable & Panel
Each month we have a Lipedema Patient Roundtable Panel hosted by Brenda Viola and Lympha Press. This is a monthly Lipedema Patient Roundtable with regular panelists including me (Siouxie @lipedema.living), Cara Cruz (aka @PaleGingerPear), Pattie Cornute (@lipedemafitness), Angelique Charles (The Lippy Butterfly), and Jenny Beaujean (aka @jenny_beaujean). We are patients and advocates working to raise awareness and to help make the lipedema journey easier for others through our platforms and voices.
We are often joined by Lipedema Specialists and other experts and advocates including the aforementioned doctors and specialists. Each month is different and it’s an hour of uplifting, enlightening conversation about topics that matter to those of us with Lipedema. It’s free to attend and via Zoom and as a Lipedema friend, you are invited to join us.
Lipedema YouTube Channels & Podcasts
The Lipedema Channel YouTube Channel with Brenda Viola from Medical Solutions Supplier, distributor of the LymphaPress lymphatic massage pump (the only one FDA approved FOR Lipedema by the way). Brenda has become a part of our circle of trust and is an amazing advocate for all of us. This channel is full of interviews and lipedema stories with some of our most vocal lipedema ladies and where you can re-watch our Monthly Lipedema Patient Roundtable Panels!
LipedemaDiva YouTube Channel with Cheryl Scoledge. This channel has numerous videos that cover a variety of aspects of Lipedema. There are also Lipedema Lite Bites on this channel which are short episodes that cover topics like “conservative therapy options” and “the stages of lipedema”.
Spotlight Lipedema Podcast with Lori Pellnitz is an awesome podcast where Lori discusses various aspects of lipedema, treatment options, etc. She interviews lipedema guests and has a wonderful voice. Enjoy!
Lipedema Websites & Blogs
The Lipedema Foundation is an amazing wealth of information. This non-profit funds scientific studies and research for Lipedema. They also have informational brochures you can order to give to your physician or others to educate them.
Lipedema Fitness is a blog run by a fellow lippy lady who has been an advocate for fitness and movement since before it was popular. There was actually a time we were advised medically not to exercise. The result was catastrophic for our health, and Patricia led the way in proving that. Her husband is a professional trainer and her blog is loaded with great information.
Lipedema Diva is the blog that Cheryl Scoledge runs, she was a presenter at the Fat Disorder Research Society conference a couple of years ago and presented on the connection of LIPEDEMA, INFLAMMATION, and DIET. She runs a popular Facebook Group and has a lot of valuable information.
Wildheart Wellness is a website run by Kelly Maynard who is a certified Biblical Health & Wellness Coach specializing in lipedema. She’s an admin in the Lipedema & Food Sensitivities group and a wealth of knowledge on living better with Lipedema.
Support and Facebook Groups
You are not alone in this. In fact, you have a support system with literally thousands of others who have gone through or are going through what you are. I can’t stress how much it can mean to have the support and knowledge from these groups. There are many groups now compared to the two that existed when I was diagnosed. Now there are thousands of us rallied together in this journey.
These Facebook groups are a wealth of knowledge, but also a place to find women like yourself and make meaningful connections.
Each of the following groups has their own vibe and purpose, and are valuable in their own way.
Lipoedema Warriors has members all over the world, many from the UK, Australia, and New Zealand as I believe that’s where it started, but it’s just as relevant in the US. They have a purpose to share valid science and stay upbeat and solution-oriented as an overall vibe. It’s pretty awesome.
Lipedema Sisters USA is the first group I joined back in 2013. I found out about it from Dr. Karen Herbst and this is where I first discovered that I was not alone. This is the group where I first found out that surgery for Lipedema could help. It’s a great place to find support.
Lipoedema Ladies UK is the first lipoedema group that was formed in the UK and they have a lively support group and are very active.
Lipedema Fitness Group is exactly what it sounds like. It was started by an awesome woman named Patricia Cornute at a time when exercise was not recommended for lipedema management. She’s a rebel who proved to be right as exercise and maintaining some semblance of fitness is essential and actually can help reduce inflammation and even reverse some of the damage caused by Lipedema. This is the group for all your fitness-specific support. Amazing.
Diet-Related Lipedema Facebook Groups
Lipedema, Diet & Food Intolerances is a support group started by Cheryl Scoledge (who dropped 6 dress sizes through diet with Lipedema). It’s not preachy on a specific diet, but really a safe haven loaded with information on inflammation and its effects on Lipedema. This is the most organized resource for lipedema articles and information for regular people.
Ketogenic Nutrition for Lipedema is a group that was started by a girl with lipedema named Katrina who lost 200lbs (90kg or 14.2 stone) by following a ketogenic diet. Both admins are Keto Coaches and really know their business.
Lipedema Life is a support group with an emphasis on the discussion of the keto diet and surgery.
Lipedema Surgery Facebook Groups
Honest Discussion about Liposuction for Lipedema was started to provide a place where we could freely discuss our surgical experiences. This is a good place whether you’ve had surgery or are considering surgery.
Liposuction for Lipedema is a well-organized group that catalogs doctors who provide Lipedema surgeries and the real-life results experienced by its members. For those considering surgery, this is definitely a good resource.
Lipedema Influencers and Advocates on Social Media
Pale Ginger Pear is part of our monthly Lipedema Patient Roundtable Panel. She’s been extremely vocal and documenting her Lipedema/Lymphedema Journey since the beginning. She’s had surgeries and shared the details through her Instagram and her blog. She is raising awareness for Lipedema on a whole new level and truly a voice worth listening to and following.