Welcome to

Lipedema.com

Support adding ICD-10 codes for lipedema today!

• Send e-mail to Nchsicd10cm@cdc.gov before October 11th advocating for lipedema in the US version of ICD-10. Include the statement "I support implementing ICD-10 codes for Lipedema now", why you care about lipedema, and challenges caused by not having specific lipedema diagnostic codes. 

• Sign the Change.org petition: https://www.change.org/p/include-lipedema-in-us-icd-10-recognize-this-distinct-disease-now-don-t-wait-for-icd-11 

For more information see: 

• CDC Public Comments Process see: https://www.cdc.gov/nchs/icd/icd-10-maintenance/proposals.html 

• CDC Topic Packet for the September 2024 meeting: https://www.cdc.gov/nchs/data/icd/September-2024-topic-packet-Final.pdf 

• See page 12 for the timeline for ICD-10 comments and revisions 

• See pages 99-102 for Lipedema material by Dr. Herbst

• ICD Maintenance Committee Meeting information page (will have the September meeting recording posted): https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html 

Community.Lipedema.com is now live and we are entering a new era in terms of support, education, and advocacy tools for our users. To join go to our Community Welcome Page, click the “Sign Up” button in the upper right corner (or the person icon on a small screen) and follow the instructions to setup your account and user profile. After you have created an account, you can select groups from the list on the left menu.

Birthdays: Lipedema.com is four years old, Lipedema Education Group was formed from the US Lipedema Standard of Care Committee two years ago. Lymph Notes (the parent organization) is now twenty-one years old!

Lipedema, also known as painful fat disorder, is a medical condition characterized by unusual fat growth and body shape that primarily affects females. Lipedema fat typically appears on the lower body. Initially both legs have similar shapes, but leg shapes may become irregular and asymmetric over time. Fat may also appear on the upper arms and other body parts.

Fat from lipedema can be exceptionally painful to touch, bruise easily, or cause pain even without being touched. However, not all women experience unusual pain and pain can be reduced or eliminated by self-care and treatment.

For more information, see: Basics/Introduction--which explains lipedema, lymphedema, related conditions and differences between these conditions--and the sections on Self-Care and Treatment.

Support, Education & Advocacy

Join our Community (community.Lipedema.com) to access support, education, and advocacy for those affected by lipedema, lymphedema, or Dercum's Disease and help us grow. Community members and leaders include patients, caregivers, health care professionals, and researchers. See Support, Education & Advocacy for details.

Lipedema Education Group

Lipedema Education Group (LEG) is a multidisciplinary team developing educational materials and courses for health care professionals and consumers to improve care for people with lipedema, lymphedema, or Dercum’s Disease. See Lipedema Education Group for more information, including how you can join LEG or the LEG Collaborators Group.

Do you know a child at risk for lipedema?

If you have lipedema, your daughters and granddaughters may inherit your condition (lipedema can be inherited from either parent). Join our Lipedema in Young People interest group for information on early diagnosis and care, including the Lipedema Treatment in Young People Best Practice Guide for medical professionals LEG is developing with Dr. Emily Iker and guides for parents and children.

Overcoming 2e Project

We are working on an updated version of Overcoming the Emotional Challenges of Lymphedema by Elizabeth McMahon, PhD (Lymph Notes 2005) based on suggestions from Lipedema Education Group members and others. This may result in a second edition (2e) or a new book, possibly with additional authors. For more information see the Overcoming 2e Project page.

Standards of Care for Lipedema

For more information see:

• US Standard of Care published in 2021 by the standard of care committee and available from Pub Med.

• Other Standards for areas outside the US.

Lipedema is a Loose Connective Tissue Disorder

In the past, lipedema was called a fat disorder or a disease of fat. Recent research shows that lipedema is more accurately described as a disorder of the subcutaneous loose connective tissue (LCT). This layer separates skin from muscle and includes the fat or adipose cells, their supporting structures, and other components.

For more information on this change, see Lipedema Is Not Just Fat.

Mission

Lipedema.com provides information for people with lipedema, their friends and family, and medical professionals. Our goal is to improve the lives of people living with lipedema.  

Join Lipedema.com

Membership is free. To sign up, see the instructions on our Community Welcome Page. After you have created an account, please join the groups/projects on the left menu that interest you. We will keep you informed of the latest developments via e-mail. Members can update their information by clicking the Profile icon on the upper right corner of Community pages. If you joined prior to April 15, 2024, please create a new account in our community system, this replaces our old membership system with the system assigned passwords.