Lipedema Blog

Woman With Incurable ’10 Stone Leg’ Condition Tells Of Constant Pain And Hope For Treatment

| Lipedema awareness | No Comments

There’s nothing worse than knowing something isn’t right with your body, especially when professionals tell you that you’re fine. What can you do? Apart from brush your health worries under the carpet. For Claire Tickle, 38, whose legs have been gaining weight at an unnatural pace since her teens, this…

Treatment Centers for Lipedema in GA & NY

| Center of Excellence for Lipedema in NYC, Dr Marcia Byrd, Dr Mark Smith, liposuction for lipedema | 9 Comments

The Lipedema Liposuction Center in Roswell, Georgia is now open and treating lipedema patients with WAL liposuction surgery. We have come so very far in a short time. Dr. Marcia Byrd traveled to Germany to train with Dr Josef Stutz in April 2014, and Dr Stutz traveled to the US…

News about lipedema spreading around the world!

| lipedema, Lipedema awareness | No Comments

Sara Bramblette, Lipedema and Lymphedema Health Activist, writes about the different stages of being newly diagnosed! http://blog.wegohealth.com/2014/09/15/the-phases-of-a-lipedema-diagnosis/ Cara Jones from Wales, UK, tells her story about diagnosis and planned surgery in Germany. http://www.newsnorthwales.co.uk/news/138229/wrexham-mum-tells-of-pain-over-tree-trunk-leg-condition.aspx stay tuned for more to come…

Dr Josef Stutz & Dr Mark Smith PostOp-Germany March 2014

Lipedema Center opens September 2, 2014 at Mount Sinai Beth Israel, Friedman Center for Lymphedema Research & Treatment in New York City

| Center of Excellence for Lipedema in NYC, Dr Josef Stutz, Dr Mark Smith, expert surgeons, lipedema experts | 10 Comments

Dr. Mark Smith, Chief of Plastic Surgery at Mount Sinai Beth Israel in New York City opens the Lipedema Center, a part of the Friedman Center for Lymphedema Research & Treatment, offering medically reconstructive lymph sparing liposuction for lipedema on September 2, 2014. Dr. Josef Stutz, one of the top…

Online article about lipedema: Is this rare disease making you look fat?

| Dr. David Amron, lipedema, liposuction for lipedema | No Comments

“Lipedema primarily occurs in the legs, specifically the anterior thighs, knees and ankles,” explains Los Angeles-based dermatologic surgeon, Dr. David Amron. “It develops the appearance of tree-like, column-like legs with disproportionate fat storage and a lot of non-pitting edema, or excess swelling. Obesity is being overweight, and fat legs may…

Scholar Alert: Lipedema Story Published by Johns Hopkins Press

| anti-fat bias, Catherine Seo, Dr Stefan Rapprich, lipedema | No Comments

Scholar Alert on my Google Alerts this morning: So maybe it’s true, one is never too old to begin a new career, get published, get a PhD, and become an advocate in a very complex healthcare system! You Mean It’s Not My Fault: Learning about Lipedema, a Fat Disorder CA…

ABC News Features Liposuction for Lipedema

| liposuction for lipedema, Uncategorized | No Comments

Lipedema, a genetic issue that distributes fat disproportionately, can now be regulated using a new liposuction-like procedure. For additional information go to: http://abc7.com/health/bad-fat-cells-sucked-out-with-liposuction/264821/

Lipedema / lipoedema Awareness Day 30: A Month of Awareness Raising

| Lipedema awareness, lipedema project, lipoedema, lipoedema project | One Comment

There’s more to the story: there may be more WHYS to body SIZE! It’s been a month of awareness raising about lipedema and progress has happened. The all time favorite BLOG post on June 5th had 937 views from 637 visitors and throughout the month there were 13,343 views. Below…

Lipedema / lipoedema Awareness Day 29: Dr. David Amron & Jasna

| Dr. David Amron, expert surgeons, lipedema, Lipedema awareness, lipedema experts, lipoedma, liposuction for lipedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Fellow BLOGGER Crystal Blount posted about dermatologist Dr. David Amron and lipedema patient Jasna. They appeared on Hallmark Channel’s “Home & Family” TV show on Friday to educate and raise awareness about lipedema. Click here to go…

Lipedema / lipoedema Awareness Days 27 & 28: Stages 1&2 lipedema before and after liposuction

| diagnosis, Dr Karen Herbst, liposuction for lipedema | 2 Comments

There’s more to the story: there may be more WHYS to body SIZE! This patient has Stage 2 lipedema, with some areas of Stage 1. The diagnosis shown here was conducted in January 2013, the patient then had lymph-sparing liposuction with Dr. Stefan Rapprich in February, April and June in…

Lipedema / lipoedema Awareness Day 26

| diet & exercise, lipedema, Lipedema awareness, lipedema project, lipoedema project, lipoedma | 2 Comments

There’s more to the story: there may be more WHYS to body SIZE! Dr Ebba Bråkenhielm is a researcher in Cardiovascular Biology with focus on therapeutic angiogenesis at the Rouen Institute for Research and Innovation in Biomedicine in Normandy, France. She has also worked in the area of adipose tissue….

Lipedema / lipoedema Awareness Day 25: Dr Babak Mehrara

| Dr Babak Mehrara, lipedema, Lipedema awareness, lipoedma, lymphedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Dr Babak Mehrara is a plastic and reconstructive surgeon at Memorial Sloan-Kettering in NYC. He is also a scientist conducting research that aims to identify the mechanisms that regulate lymphatic function, lymphatic regeneration after surgery and the…

Lipedema / lipoedema Awareness Day 24

| documentary, lipedema, lipedema project, lipoedema project, lipoedma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! A very long day of research and teaching, so for today (late as it now is) I again share the preview of the documentary for those new to this site. You Mean It’s Not My Fault: Lipoedema,…

Lipedema / lipoedema Awareness Day 23: Dr Dayan and Dr Smith post surgery in Germany

| Dr Joe Dayan, Dr Josef Stutz, Dr Mark Smith, lipedema, lipedema project, lipoedema project, lipoedma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Dr Dayan and Dr Smith reflecting on their time in Germany observing and learning from numerous surgeries. [youtube https://www.youtube.com/watch?v=XJRuh-edI2I] The Center of Excellence for Lipedema, part of the Friedman Center for Lymphedema Research and Treatment at Mt…

Lipedema / lipoedema Awareness Day 22: Nicole’s story

| diagnosis, Dr Josef Stutz, Dr Karen Herbst, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Nicole was diagnosed by Dr Karen Herbst at the FDRS (Fat Disorders Research Society) conference in Oct 2013, and then had surgery with Dr Josef Stutz in Germany in March & April 2014. Her story is so…

Lipedema / lipoedema Awareness Day 21: #ihaveembraced

| anti-fat bias, body image, obesity | One Comment

There’s more to the story: there may be more WHYS to body SIZE! Kudos to Taryn Brumfitt, who after 3 pregnancies was contemplating cosmetic surgery and did a complete turn around and asked herself, what if, WHAT IF, I begin to love my body just as it is, right now….

Lipedema / lipoedema Awareness Day 20: Dr Josef Stutz, Dr Mark Smith and Dr Joe Dayan

| Dr Joe Dayan, Dr Josef Stutz, Dr Mark Smith, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Drs Smith and Dayan trained in surgeries with Dr. Josef Stutz in Germany. Dr Stutz developed the use of WAL, Water assisted jet liposuction, specifically for lipedema. Drs Smith and Dayan are co-directors of the Friedman Center…

Lipedema / lipoedema Awareness Day 19: Dr Joe Dayan and Dr Mark Smith

| Center of Excellence for Lipedema in NYC, Dr Joe Dayan, Dr Mark Smith, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema, Uncategorized | No Comments

There’s more to the story: there may be more WHYS to body SIZE! After they trained all day in surgeries with Dr. Josef Stutz in Germany, I had the opportunity to informally chat with Drs Mark Smith and Joe Dayan about their experiences with surgery and their collaboration. In addition…

Lipedema / lipoedema Awareness Day 17: Dr Gerhard Sattler, Dr Mark Smith, and Dr Joe Dayan in Germany

| documentary, Dr Gerhard Sattler, Dr Joe Dayan, Dr Mark Smith, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Dr. Gerhard Sattler established tumescent liposuction in Germany in 1989 and has performed over 10,000 liposuction surgeries over the past 25 years.  His coaching about the intricacies of liposuction specifically for lipedema are invaluable. WARNING: graphic video…

Lipedema / lipoedema Awareness Day 16 – Cassandra’s Story (part 1)

| diet & exercise, Dr Josef Stutz, lipedema, Lipedema awareness, lipedema project, lipoedema project, lipoedma, liposuction for lipedema, Uncategorized | No Comments

There’s more to the story: there may be more WHYS to body SIZE! I met Cassandra in Bad Steben, Germany in March when we were both having lymph-sparing liposuction surgery with Dr. Josef Stutz. She has two small children, and her love for them and her husband motivated her to…

Lipedema / lipoedema Awareness Day 15 – We Want to Keep Moving (Netherlands video)

| lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, Uncategorized | 2 Comments

There’s more to the story: there may be more WHYS to body SIZE! Though in Dutch (soon to be English and other languages captioned) this video is a great overview of lipedema/lipoedema or lipodem and women’s experiences. Very well done and easy to follow even if you don’t understand Dutch….

Opportunity to Share your Lipedema Story for Publication!

| documentary, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, publications, Uncategorized | No Comments

FOR PUBLICATION!!! Would you be willing to share your lipedema/lipoedema story in detail? Are you ok for it to be widely published? Are you willing to share photos as well as your story? If your answer is YES, please contact [email protected] Send a short essay (1 page) about your experience…

Lipedema / lipoedema Awareness Day 12 – Profile: Dr. Stefan Rapprich

| Dr Stefan Rapprich, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema, Uncategorized | 3 Comments

There’s more to the story: there may be more WHYS to body SIZE! Dr Steffan Rapprich has been performing liposuction for lipedema/ lipoedema for over 20 years in Darmstadt & Sonthofen Germany. Dr Jeffrey Klein originated the tumescence procedure for liposuction in the US, and it was brought to Germany…

Lipedema / lipoedema Awareness Day 11 – Profile: Dr. Josef Stutz

| Dr Josef Stutz, expert surgeons, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema, Uncategorized | 4 Comments

There’s more to the story: there may be more WHYS to body SIZE! (note: today was catch up from jet lag) Dr Josef Stutz reviewing information on lymph-sparing liposuction for lipedema/ lipoedema with his wife, Jutta, illustrating pre/post op treatments of endermologie. [youtube https://www.youtube.com/watch?v=N2rfb_wFB7o] Comments and feedback most welcome! Remember…

Lipedema / lipoedema Awareness Day 10 – Profile: Dr. Wilfried Schmeller

| Dr Wilfried Schmeller, expert surgeons, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, liposuction for lipedema | One Comment

There’s more to the story: there may be more WHYS to body SIZE! (note: from the conference in London – Saturday 7 June 2014) The launch of the elearning lipoedema module was accompanied by a day long conference. Dr. Schmeller was one of the speakers, and I was able to…

Lipedema / lipoedema Awareness Day 9

| lipedema, Lipedema awareness, lipedema project, lipoedema project, lipoedma, liposuction for lipedema | No Comments

There’s more to the story: there may be more WHYS to body SIZE! (note: posting from London, about to leave to fly back to Boston) Lipoedema UK in partnership with the Royal College of General Practitioners launched an elearning module on Lipoedema on Saturday June 7, 2014. I am so…

Lipedema / lipoedema Awareness Day 8

| anti-fat bias, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, obesity, Uncategorized, weight stigma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! (note: posting from London) Weight stigma and anti-fat bias proliferate within the healthcare system. The research from Dr Kim Gudzune from Johns Hopkins in Baltimore, US, and Dr Judy Swift from the University of Nottingham in the…

Lipedema / lipoedema Awareness Day 7

| lipedema, Lipedema awareness, lipedema project, lipoedema project, lipoedma, media effects | No Comments

There’s more to the story: there may be more WHYS to body SIZE! (note: posting from London filming an exciting weekend with Lipoedema UK!) Obesity, weight, body issues are a major theme in media. This clip highlights several media experts and the conditions within which women are barraged with mixed…

Lipedema / lipoedema Awareness Day 6

| anti-fat bias, lipedema, Lipedema awareness, lipedema experts, lipedema project, lipoedema project, lipoedma, weight stigma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! (note: posting from the Shannon Airport on my way to London for an exciting weekend with Lipoedema UK – more will be posted this weekend about this event!) When I first was diagnosed with lipedema, I was…

Lipedema / lipoedema Awareness Day 5

| lipedema, Lipedema awareness, lipoedma, obesity, Uncategorized | 9 Comments

There’s more to the story: there may be more WHYS to body SIZE! Lipedema is hereditary, often passing from mother to daughter. It can also pass from father to daughter, men can be carriers even though they don’t themselves have the disorder. [youtube https://www.youtube.com/watch?v=g1ThhD6s7rY] Comments and feedback most welcome! Remember…

Lipedema / lipoedema Awareness Day 4

| diet & exercise, lipedema, Lipedema awareness, lipoedma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Lipedema is also a dysfuntion in fat metabolism. Simply, diet and exercise don’t work to reduce or eliminate lipedemic fat.  This video clip shares a bit about diet & exercise experiences. [youtube https://www.youtube.com/watch?v=jfsf7HigqvY] Comments and feedback most…

Lipedema / lipoedema Awareness Day 3

| lipedema, Lipedema awareness, lipoedma | No Comments

There’s more to the story: there may be more WHYS to body SIZE! Onset or exacerbation is commonly associated with hormonal disturbance. This video clip shares a bit about puberty & pregnancy experiences. [youtube https://www.youtube.com/watch?v=1_5SYma1EF8] Comments and feedback most welcome! Remember to spread the word about lipedema. For more info…

Lipedema / lipoedema Awareness Day 2

| courage, Dr Josef Stutz, lipedema, Lipedema awareness, lipoedma, liposuction for lipedema | 5 Comments

I met Meg in Bad Steben, Germany in March when we were both having lymph-sparing liposuction surgery with Dr. Josef Stutz. Meg is dynamic and direct – willing to share her story and her journey. Her faith, courage and determination is very inspiring and helpful. This is a very short…

Lipedema / lipoedema Awareness Day 1

| documentary, lipedema, Lipedema awareness | No Comments

First of 30 clips, one each day this month – Lipedema/Lipoedema Awareness month. These short clips are raw footage, a first cut for the documentary about lipedema. For more info www.lipedema-simplified.org [youtube https://www.youtube.com/watch?v=K8_WEmty3oY] Comments and feedback most welcome! Remember to spread the word about lipedema, There’s more to the story:…

Lipedema Awareness Continues to Grow

| lipedema, Lipedema awareness, lipedema project, lipoedema project | 2 Comments

When I first discovered I have lipedema in July 2012, there was little information available. I originally put up the website www.lipedema-simplified.org as a repository for the significant amount of research I had gathered for my Primary Care Physician. He was willing, and I wanted to help him to help…

June is Lipedema / Lipoedema Awareness Month

| Dr Joe Dayan, Dr Josef Stutz, Dr Mark Smith, Dr Reggy Schift, Dr Stefan Rapprich, expert surgeons, lipedema, Lipedema awareness, lipedema experts, lipoedma, Prof Dr Foeldi, Prof Dr Földi, Prof Dr Manuel Cornely | 5 Comments

Lipedema/lipoedema was first named as a disorder/disease at the Mayo Clinic by Dr. Edgar Hines and Dr Edgar Allen in 1940.  Lipedema, known as lipoedema in Europe, is a chronic disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the…

Global Survey on Lipedema / Lipoedema

| lipedema, lipoedma, research | 2 Comments

Do you have lipedema/lipoedema? Let your voice be heard and be a part of a global research project. A group in the Netherlands led by Tilly Smidt is reaching out to gather data on your experiences with lipedema/lipoedema. Please take approximately 20 minutes (60 questions) to participate in the Global…

The Lipedema Project

| lipedema, lipedema project, lipoedema project, lipoedma, Uncategorized | 3 Comments

ANNOUNCING SPECIAL LIPEDEMA VIDEO PROJECT: It’s been18 months of video recording, and literally hundreds of hours of interviews and surgeries from lippy ladies, doctors, surgeons, therapists, and other experts. Are you interested in participating in a viewing of footage, as we move into postproduction? If you have lipoedema, and could…

Anti-Fat Bias in the Healthcare System

| anti-fat bias, compassion, lipedema, obesity, weight stigma | 3 Comments

So often women with lipoedema/lipedema report going to their doctors looking for solutions or even just a diagnosis and being told that it’s their fault, that they need to diet and exercise, and to come back after they have lost weight, etc etc etc. Only with lipedema, a genetic disorder,…

Magic Happened with Professor Dr Földi in Germany

| compassion, courage, Dr Joe Dayan, Dr Mark Smith, expert surgeons, Prof Dr Földi | No Comments

One HIGHLIGHT of my recent trip to Germany Arriving in Hinterzarten in Germany is a bit like driving through the fairy tales of my childhood, driving slowly and intimately through the Black Forest. The first time I made this journey was over a year ago. It was my first trip…

Lipedema management – by Linds!

| lipedema, solutions | No Comments

Lipedema: this unknown (often referred to as “painful fat disorder”), misunderstood, autoimmune disease, rarely diagnosed. Much like having a “lazy pancreas” with my type 1 diabetes, my lymphatic system is also lazy. It’s pretty important – drains all of the fluid/toxins from my body, and when it’s lazy, it has…

Lipedema and Obesity

| Herbst, lipedema, obesity | One Comment

Information about lipedema being a disease and not a lifestyle choice is beginning to spread, albeit still in like-minded places. Still, I am grateful for all steps in the right direction – AWARENESS. 17 million women in the US have lipedema, very few know about it YET! We are having…

Soon: 1st Center of Excellence for Lipedema Care and Treatment in NYC

| documentary, expert surgeons, lipedema, liposuction for lipedema | 13 Comments

A year ago today I was in the Operating Room at Beth Israel Medical Center/Mt Sinai Hospitals filming with Dr. Mark Smith and Dr. Joe Dayan. Working with them has been a marathon of a different sort and it looks like we are about to cross the finish line! The…

Courage to follow your heart and intuition

| courage, solutions | No Comments

Finding out about lipoedema was finding a solution in the midst of chaos. After the complications from surgery in 2011, it looked like there were no answers, no way out, no way to find a solution. Two things – one is from Dr. Land and my days at Polaroid –…

Documentary Preview

| documentary, lipedema | 2 Comments

http://www.youtube.com/watch?v=ncvw-SwWk5Q Obesity is a rising crisis, often blamed on diet and life-style choices. However, an estimated 17 million women in the U.S. and 370 million worldwide have the hereditary genetic fat disorder, lipedema/lipoedema, without knowing it. Anti-fat bias proliferates our healthcare system and this disorder is unknown and mis-diagnosed. This…

Saying YES!

| lipedema, surrender | 2 Comments

My main focus has been on Facebook and several closed lipedema groups, but I realize these groups, as helpful as they have been, are limited in their reach. There are so many who might not look there. So it’s time to reach out to those who might somehow stumble upon…

God's dream is that you and I and all of us will realize that we are family, that we are made for togetherness, for goodness, and for compassion.
Desmond Tutu