"In the last 6 to 7 years there has been a huge increase in our knowledge of lymphatic science. There have been big changes, but I'm still disappointed at the lack of physician interest in lymphatics. There aren't many areas in medicine where the patient can tell the doctor more than the doctor knows, but that is certainly true for lymphedema."
~Professor Peter Mortimer
How to Advocate for Yourself in the Healthcare System
The Disease They Call FAT documentary - several years in the making, directed & produced by Catherine Seo, PhD in partnership with executive producer, Mark L. Smith, MD, FACS, the documentary is an overview and discovery about lipedema told through the stories of patients, doctors, surgeons, scientists, researchers, therapists and advocates.
While this is a longer and complex conversation, check back for some tips on how to best help your providers help you.
The Disease They Call FAT, a documentary film about lipedema
Diagnosis - excellent info from LymphedemaPeople to help your healthcare professional understand the differences between lymphedema and lipedema and diagnosis you.
DIFFERENTIAL DIAGNOSIS FOR LIPEDEMA
National Institutes of Health/NIH: ORDR Office of Rare Diseases Research-USA
Genetic and Rare Diseases Information Center (GARD)
Overview of lipoedema.
Co-founded by Karen Herbst, M.D., Ph.D., specialist in RADs and Beau Dunn, a model diagnosed with lipedema in 2011.
Molly M. Petterson
Molly is a professional photographer, farmer, and an advocate for empowering women. Visit her site for information about lipoedema as well as gorgeous photos.
LIPESE proposes to build bridges between patients, caretakers and researchers. LIPESE stands for Lipedema International Partnership of Entrepreneurs to Support and Educate.
Online support group with great information. Created by people with Lymphedema for people with Lymphedema.
http://www.lipoedemaladies.com - support group
http://www.lipoedema.co.uk - awareness raising
Lipoedema UK's aim is to raise awareness of Lipoedema among the medical profession in the UK (where it is not listed in medical textbooks or taught in medical schools) as well as the general public; advocate early diagnosis and better treatment; and raise funds for vital research. They are a reliable source of authoratitive medical advice for women with Lipoedema and collate international research. Professor Peter Mortimer, who is widely acknowledged to be the UK's leading Lipoedema expert is one of the patrons. He runs a Lipoedema clinic at St George's Hospital in London,and his Nurse Consultant and his Geneticist are also on their board, together with women who have Lipoedema and Lipoedema therapists.
Lipoedema is the abnormal build-up of fat cells in the legs, thighs and buttocks. Signs and symptoms of lipoedema/treatment
Lipoedema Australia Support Society (lass)
LASS – Lipoedema Australia Support Society was set up to provide public advocacy, awareness, information, support & resources for people with Lipoedema. LASS has a private Facebook group which people are welcome to join, website, support meetings, heaps of up to date information and resources and links with individual medical people and organisations both in Australia and overseas. Although this is an Australian group LASS welcomes members from all over the world.
It is unusual to be diagnosed in Australia so LASS is seeking to build awareness in Australia and advocate for better diagnosis, treatment and management. June is Lipoedema Awareness month in Australia so LASS is currently planning an Awareness Campaign.
LASS is extremely proud to have renown world leader in lymphoedemas and other oedemas, Professor Neil Piller, the team Leader of Flinders Medical Centre: Lymphoedema Research Unit as their Patron. Marie Doolan, a long time Australian advocate and advisor for lipoedema and compression stockings is a a valued LASS Advisor.
Flinders Medical Centre: Lymphoedema Research Unit - Australia
The Lymphoedema Research Unit has a holistic approach to the assessment and management of lymphoedemas and other oedemas and is committed to providing the best and leading edge practice to all of its services. The team leader of the clinic is Professor Neil Piller.
Masso Institute - Australia
Good overview about lipoedema.
DermNet NZ - New Zealand
DermNet NZ was established by the New Zealand Dermatological Society, the national association of New Zealand registered dermatologists, to provide information about skin diseases, conditions and treatment for patients and their health professionals. Good overview about lipoedema.
National Lymphedema Network
Lymphatic Education & Research Network
Lymphology Association of North America
American Lymphedema Framework Project
International Lymphedema Framework
Society for Vascular Medicine
Step Up, Speak Out
International Society of Lymphology
Dr. Vodder Clinic – Austria
Professor/Dr. Corradino Campisi: – Genoa, Italy
Lymphology and Lymphatic Microsurgery
National Center for Biotechnology Information (genetics)
A Closer Look at Lipedema and the Effects on the Lymphatic System
Resources about Lipoedema
Joachim Zuther, Lymphedema Specialist
Closer Look at Lipedema (article)
Cosmetic Surgery Times
Article on liposuction and lipoedema - highlights Louis Habbema, M.D., Ph.D.
International leader in lipedema management stresses need for greater awarenes
Lymphedema Clinic at Brigham & Women's Faulkner Hospital, Boston, MA, USA