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Lipedema Simplified & The Lipedema Project ANNOUNCEMENTS
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LAUNCHING MARCH 1, 2016: Online CME course for Physicians (maximum: 5.5 AMA PRA Category 1 Credits)
Setting the Research Agenda for Lipedema: Steps Towards a Cure
For information and to register
CLICK HERE http://lipedemaproject.org/cme-setting-the-research-agenda-for-lipedema/

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Documentary available NOW in HD downloads and DVD plus many more EXTRAS! http://DiseaseTheyCallFAT.tv

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Media coverage in Florida: Orlando WKMG
Texas: Houston KPRC
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1st International Symposium on Lipedema took place in New York City, April 17-18, 2015
videos, image gallery, more info coming soon
www.lipedemaproject.org/symposium2015

Lipedema Think Tank with 35 experts, doctors, surgeons, therapists, and patients/advocates
from around the world
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CLICK HERE for Infographic about lipedema

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Welcome
Welcome to lipedema simplified. This website is a portal to information about a relatively common fat disorder that is often mistaken for simple obesity. The European spelling is lipoedema and both spellings are used interchangeably in documents posted on this website. If you have struggled with fat hips and legs and/or upper arms, and that fat would not go away despite diet and exercise, you may have lipedema.

After manifesting the symptoms for many years, and seeking answers from many specialists, I was misdiagnosed; knowledge about lipedema is almost non-existent in the US at this time. To deal with the painful fat and mobility issues, I had five surgeries which resulted in significant complications.

As one who has this disorder, I have great respect for my Primary Care Physician (PCP). He is kind, knowledgeable, and thorough. He has listened and worked with me to find a solution. He has supported my research and my journey. He has been willing to help me in coming up with treatment options.

Detailed information and studies for healthcare providers are also available on this website.   If you suspect you might have lipedema, direct your doctor, surgeon or endocrinologist here.

About Lipedema
The video below is a brief overview and description of lipedema by Karen L. Herbst, Ph.D., M.D. Dr. Herbst is an endocrinologist specializing in Rare Fat Disorders. For more info see her website.

Dr. Karen Herbst introduces the world to the painful rare Adipose Disorder Lipedema.

What is lipedema?
Lipedema is a disorder of adipose tissue distinguished by five characteristics:
1) it can be inherited;
2) it occurs almost exclusively in women;
3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese;
4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and
5) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise.

Who is Affected?
Lipedema predominantly effects women only, though there are a few rare cases of it in men. Believed to be hormonal in nature, Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery or any surgery with anesthesia.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. That would mean close to 17 million women in the United States alone.

What does Lipedema Look Like?
Lipedema shows up primarily as disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Lipedema fat can be very painful, and if not kept in check through a healthy lifestyle the condition can worsen, and patients can become progressively less mobile.

What Can Be Done?
This website attempts to explore just this question.

Poorly Understood Disease
If you have found this website, you are to be congratulated.  Until recently, very few have even heard of lipedema, especially in the United States. Lipedema is a poorly understood disease globally, but even more so in the United States; statistics show it is markedly under-diagnosed in this country. Lipedema is a painful fat disorder that, if untreated, can cause multiple health problems leading to immobility. The quality of life, emotionally and physically, for a lipedema patient often suffers because the disease is typically dismissed as simple obesity.

Lipedema fat cannot be exercised or even starved away. Lipedema is a disorder of adipose tissue that occurs almost exclusively in women; it has also been called "painful fat syndrome." (Although lipedema affects mostly women, there are a few cases that have been seen in men.) Typically there is abnormal bilateral and symmetrical swelling of the legs and hips that extends down towards the ankles where the fat forms a ring just above the ankle. This swelling is due to accumulations of fat and fluid in the tissues under the skin. Fatty bulges can be seen on the outer surfaces of the thighs and sometimes the upper arms are affected as well. Interestingly enough, the swelling often extends from the waist down, almost in a distinct line toward the ankles, with the feet remaining unaffected.

This disorder can be inherited; most cases gradually develop during puberty, although it may develop or worsen due to trauma, such as surgery, peri-menopause or pregnancy. Lipedema has been seen in morbidly obese people and in anorexic individuals. It may be possible to limit the effects of Lipedema, through careful weight management, if diagnosed early enough. There are estimates that put the incidence of lipedema as high as 11% of the adult female population which in the US is 17 million women.

PRESENTATIONS
Weight Stigma Conference 2013
May 16, 2013, University of Birmingham, UK
Weight stigma and health: whose problem is it?

POSTER SESSION: Anti-Fat Bias: Media’s Influence on Obesity Stigma, Lipedema, and Its Impact on Receiving Quality Healthcare (click for poster PDF)

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Symposium with Professor Dr. Peter Mortimer
May 18, 2013, London, UK
PRESENTING: Lipedema & Treatment Options: Liposuction, Process & Results

Lipedema & Treatment Options: Liposuction, Process & Results (revised) from Catherine Seo on Vimeo

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Surgeon Joke outtake (youTube)
my favorite out take, I laughed and laughed! it's helpful for me to remember that humor can get me through even the most dire situations!

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PLEASE NOTE: I continue to research lipededema/lipoedema. I am now CoDirector of the Lipedema Project partnered with Mark L. Smith, MD, FACS, Director of the Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel in New York City. http://LipedemaProject.org is the new home for research, online courses, and resources for lipedema. This website will remain for my own personal journey and meanderings so stay tuned for an update. In the meantime, please feel free to contact me. ~Catherine
(15 January 2016)

Documentary DVD, CD, plus extras

CLICK HERE to order

DVD 15% off prepay Lipedema
Lipedema Center at Mount Sinai Beth Israel, Friedman Center for Lymphedema Research & Treatment in New York City click here for more info

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SPECIAL ANNOUNCEMENT: preliminary MeSH identification number (DUI or Descriptor Unique Identifier) in the National Library of Medicine (NLM) for LIPEDEMA is D065134.

MeSH (Medical Subject Headings) is the NLM controlled vocabulary thesaurus used for indexing articles for PubMed. Without a MeSH term, lipedema cannot be recognized for insurance coverage. Now our goal is to get an International Classification of Diseases (ICD) code for lipedema so care will be covered by insurance. This is a time to celebrate for millions of women affected with lipedema/lipoedema.

Special thanks to Dan Cho, Ph.D.
Lead MeSH Analyst | National Library of Medicine & National Institutes of Health who is working with us so generously in getting this finally approved.


UK News
Dr Dirk Pilat, editor of the Lipoedema UK and Royal College of GP’s elearning course on Lipoedema, was invited on to Dr Mark Porters BBC Radio 4 programme  Inside Health on 23rd September to discuss lipoedema. Programme link: http://www.bbc.co.uk/programmes/b04hvynt


Diagnosis

Excellent info from LymphedemaPeople to help your healthcare professional understand the differences between lymphedema and lipedema and diagnosis you.
DIFFERENTIAL DIAGNOSIS FOR LIPEDEMA


Dr Karen Herbst Q&A about Lipedema: interviewed by Catherine Seo & presented at UK Conference Nov 10, 2012
click here for videos


HUMANMED features Drs Stutz, Heck, Dayan and Smith & Catherine Seo in June Newsletter

HumanMed is the company in Germany that produces the medical equipment used in WAL lymph sparing liposuction for lipedema (Water assisted jet liposuction). In their recent newsletter, they featured the event held in Frankfurt Germany, lipedema experts Drs Stutz and Heck, and the beginning of surgical procedures by at Mt Sinai Beth Israel in NYC this coming fall by Drs Mark Smith and Joe Dayan. Click here to read the short article.

 


visitor map above Sept 2012-Jan 2015
visitor map below beginning July 13 2015


updated 15 January 2016 from Cambridge, MA, USA
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Please be aware that the information on this Website is provided "as is" for general information only. It is not intended as medical advice, and should not be relied upon as a substitute for consultations with qualified health professionals who are familiar with your individual medical needs. Additionally, this site is non-commercial, does not sell nor endorse any specific treatment or products. This is informational only.

© lipedema/lipoedema simplified LLC. All rights reserved. 2012-2016.

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