The websites listed below are excellent ways to learn about lipedema and offer resources to contact for additional information about diagnosis and treatment.

Fat Disorders Resource Society
Lipedema Foundation
Stanford Healthcare

Standard Of Care

The United States Standard Of Care was released in 2021 by experts in the United States in the field of lipedema research and treatment. I would recommend printing a copy of this and giving it to all personal physicians and practitioners, as it outlines the newest research in diagnosis and treatment of lipedema. Click on the image below to download the PDF for this document.

Area Resources

Resources in the Southwest United States include lists of physicians, surgeons, therapists and other support in the states of Arizona, California, Colorado, Nevada, Utah, and western Texas.

Books

I have included a list of numerous books about lipedema which have been recommended to me by other patients.

Clinical Trials

There are several ways to search for clinical trials.

Lipedema Trials | Clinical Trials.gov
Lipedema Trials | Good Clinical Practice Network
LEGWORK Clinical Study Finder | Lipedema Foundation

Continuing Education

Below are educational sites I’ve been able to find.

Lipedema Continuing Education Activity | National Institutes Of Health

Diagnosis Codes

Q82.0 Hereditary lymphedema

Q82.0 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes. The 2023 edition of ICD-10-CM Q82.0 became effective on October 1, 2022. This is the American ICD-10-CM version of Q82.0; other international versions of ICD-10 Q82.0 may differ.

E88 Other and unspecified metabolic disorders

……E88.2 Lipomatosis, not elsewhere classified

…………..E88.20 Lipedema, Stage 1
…………..E88.20 Lipedema, Stage 2
…………..E88.20 Lipedema Stage 3
…………..E88.28 Other or Unspecified Lipedema

E88.2 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes. The 2023 edition of ICD-10-CM E88.2 became effective on October 1, 2022. This is the American ICD-10-CM version of E88.2; other international versions of ICD-10 E88.2 may differ.

Exercise

Lipo Workout For Lipedema

Laboratory

Dr. Karen Herbst, who is considered the upmost expert in lipedema, has shared the PDF file Labs For Fat Disorders, which lists those lab values she feels necessary to help with diagnosis.

Miscellaneous

Medications And Supplements To Avoid When Treating People With Lipedema | Dr. Karen Herbst, National Institutes Of Health

Patient Registry

Please consider joining the lipedema registry at the Lipedema Foundation in order to share your experience with lipedema. This invaluable information is compiled and used to learn more about lipedema and to develop new treatment approaches.

Printable Materials

The Lipedema Foundation has created the informational lipedema brochures above in English, German and Spanish for your physicians and practitioners. These can either be printed at home or requested from the Lipedema Foundation.

The Fat Disorders Resource Society has created the informational lipedema card above for your physicians and practitioners, which can be requested from FDRS.

Physicians

Most in our community understand that locating a practitioner who is knowledgeable about lipedema is nearly an impossibility.

Ways to Search for Physicians

There are several methods to use to look for a physician who is knowledgeable about lipedema. Those specialties which usually are good places to look are: cardiologists, vascular/vein doctors, dermatologists and lymphedema clinics.

The American Board Of Venous And Lymphatic Medicine offers a physician search locator for Certified Vein Specialists.

The Ehlers-Danlos Society offers the Ehlers Danlos Healthcare Professionals Directory for physicians and therapists.

The Lipedema Foundation also offers tips on finding a lipedema specialist.

LINK: How To Find A Good Doctor

Research Papers

The Lipedema Foundation has a new way to search for papers on lipedema research called the LEGATO library.

Supplements

How Mucinex Works In Treating Lipedema | Dr. Marcia Byrd, Lipedema Surgery Center

PDF: Dr. Karen Herbst Supplements List 2019

Symptom Trackers

Click on images to download.

Therapists

About Certified Lymphedema Therapists

There is no single set of criteria that define and certify a “certified lymphedema therapist.” The National Lymphedema Network (NLN) and the Lymphology Association Of North America (LANA) are two organizations which have recommended minimum standards for competency, including 128-135 hours of training in decongestive therapy and hands-on experience with lymphedema patients. A lymphedema therapist specializes in the diagnosis, care, and treatment of lymphedema — he or she may be a nurse practitioner, doctor, physical therapist, occupational therapist, etc. Practitioners who specialize in lymphedema therapy are adept at manual decongestive therapy — the form of specialized massage used to stimulate lymph drainage in affected areas of the body — and applying compression wraps. There are several schools mentioned below for this type of training.

LANA also recommends courses in relevant lymphatic network-focused anatomy and physiology, as well as hands-on instruction. There is a voluntary exam that aspiring a lymphedema therapist may take upon completion of this course work. The exam is the Clinical Lymphedema Therapist-LANA (CLT-LANA). Upon successful completion of the exam, a healthcare provider may proclaim their CLT-LANA certification.

What is a lymphedema therapist and how can one help you? (n.d.). Lymphedema Products. https://www.lymphedemaproducts.com/blog/what-is-a-lymphedema-therapist-and-how-can-one-help-you/

Ways to Search for Therapists

The Lymphology Association Of North America (LANA) certifies therapists and offers a therapist locator.

There are several different schools and methods of instruction in lymphatic drainage. Use the links below to locate a therapist near you.
Academy Of Lymphatic Studies Therapists (ACOLS)
Casley-Smith Therapists
Chikly Therapists
Klose Therapists
Norton Therapists
Vodder Therapists

You can also use the resource map at the American Lymphedema Framework Project to locate therapists in your area.