Lipedema Resources
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"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
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 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.
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

Lipedema/Lipodema/Lymphedema Resources

National Institutes of Health/NIH: ORDR Office of Rare Diseases Research-USA
http://rarediseases.info.nih.gov/GARD/Condition/10542/QnA/24262/Lipedema.aspx
Genetic and Rare Diseases Information Center (GARD)
Overview of lipoedema.

CureLipedema
http://curelipedema.org/
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
http://www.mollympeterson.com/2013/08/a-lipedema-update-long-overdue/
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
http://www.lipese.com/
LIPESE proposes to build bridges between patients, caretakers and researchers. LIPESE stands for Lipedema International Partnership of Entrepreneurs to Support and Educate.

Lymphedema People
http://www.lymphedemapeople.com/

Online support group with great information. Created by people with Lymphedema for people with Lymphedema.

BigFatLegs
http://www.bigfatlegs.com

My Lipedema
http://www.mylipedema.com

Lipoedema UK
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.

NHS Choices
Lipoedema is the abnormal build-up of fat cells in the legs, thighs and buttocks. Signs and symptoms of lipoedema/treatment
http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx

Lipoedema Australia Support Society (lass)
www.lass.org.au

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
http://www.flinders.sa.gov.au/lymphoedema/pages/overview/

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
http://vylymph.com/lipoedema/
Good overview about lipoedema.

DermNet NZ - New Zealand
http://dermnetnz.org/dermal-infiltrative/lipoedema.html
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
www.lymphnet.org

Lymphatic Education & Research Network
www.LymphaticNetwork.org

Lymphology Association of North America
www.clt-lana.org

American Lymphedema Framework Project
www.alfp.org/

International Lymphedema Framework
www.lympho.org/

Society for Vascular Medicine
MedCAC Letter

LymphNotes
www.lymphnotes.com

E-Lymph Notes
www.elymphnotes.com

Lymphedema People
www.lymphedemapeople.com

Step Up, Speak Out
www.stepup-speakout.org

Healthy Steps
www.gohealthysteps.com

International Society of Lymphology
www.u.arizona.edu/~witte/ISL.htm

Dr. Vodder Clinic – Austria
www.lymphedema-clinic.com

Professor/Dr. Corradino Campisi: – Genoa, Italy
Lymphology and Lymphatic Microsurgery
http://www.chirurgiadeilinfatici.it/

National Center for Biotechnology Information (genetics)
Resources about Lipoedema
http://www.ncbi.nlm.nih.gov/sites/ga?disorder=lipedema

A Closer Look at Lipedema and the Effects on the Lymphatic System
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/Lipedema Treatment

Lymphedema Clinic at Brigham & Women's Faulkner Hospital, Boston, MA, USA
http://www.brighamandwomensfaulkner.org

Compression Garments

 

 

 

 

 

 
BMI For Adults Widget

 

 

lymphatics
Lymphatic System
(image from Professor Corradino Campisi)

 

updated 12 March 2017 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.

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