About Lipedema

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What is lipedema?

Lipedema is a chronic condition that occurs almost exclusively in women and manifests as symmetrical buildup of painful fat and swelling in the limbs, sparing the hands and feet. 

For more on lipedema epidemiology, health burden, diagnosis, treatments, and research opportunities, please see Lipedema: A Giving Smarter Guide

 

What is the current state of lipedema research?

Although lipedema was first described in the 1940's, many research questions remain unanswered.

A critical issue is the poorly understood disease biology, which for diagnosed patients results in limited treatment options that, at best, relieve the symptoms of lipedema. Thus, more research is needed to determine and understand the biological processes affected in lipedema patients.

Individuals who suffer from the disease are further impacted by the absence of diagnostic tools, the lack of public and medical awareness of lipedema, and the stigma associated with weight gain. As a result, the true number of women with lipedema, or its epidemiology, is unknown.

For more about the Lipedema Foundation's Research Program

 

PIVOTAL Publications

Lipedema: Friend and Foe

"In new data collected, lipedema was associated with a low risk of diabetes (2%), dyslipidemia (11.7%) and hypertension (13%) despite an obese average body mass index (BMI) of 35.3 ± 1.7 kg/m2."

Tissue Sodium Content is Elevated in the Skin and Subcutaneous Adipose Tissue in Women with Lipedema.

"CONCLUSIONS: Internal metrics of tissue sodium and adipose content are elevated in patients with lipedema, potentially providing objective imaging-based biomarkers for differentially diagnosing the under-recognized condition of lipedema from obesity."

Differentiating lipedema and Dercum's disease

"CONCLUSIONS: The significantly lower prevalence of DM2 in people with lipedema compared with DD may be due to the greater amount of gynoid fat known to be protective against metabolic disorders. The high percentage of hypermobility in lipedema patients indicates that it may be a comorbid condition. The location of fat, high average daily pain, presence of lipomas and comorbid painful disorders in DD patients may help differentiate from lipedema."

The adipose tissue–derived stromal vascular fraction cells from lipedema patients: Are they different?

"Results. Our results demonstrated a significantly enhanced SVF cell yield isolated from lipedema compared with healthy patients. In contrast, the adipogenic differentiation potential of SVF cells isolated from lipedema patients was significantly reduced compared with healthy patients."

Coding:

ICD-11

EJ44 Lipoedema or EF02.2 Lipoedema

ICD-10 2017 and German ICD-10

E88.2 Lipomatosis

E88.21 Lipedema, stage 1

E88.22 Lipedema, stage 2

E88.23 Lipedema, stage 3

E88.24 Lipedema, other

Historical ICD-10/9 codes

457.1 "lymphedema" if there is swelling component

782.3 "edema"

Q82.0 "hereditary lymphedema"

272.8 "lipomatosis" 

E65 "swelling" 

R60 "Oedema, not elsewhere classified"

 

 

 

 

 

 

Diagnosis:

Diagnosing lipedema involves taking the medical history and performing a physical examination of the affected individual.  As the field lacks a diagnostic test, clinicians consider multiple criteria to determine whether an individual has lipedema.

More about diagnosis

Videos on Diagnosing Lipedema: Interview and Physical Exam

Resources:

A compilation can be found on our Resources page

For Patients and Caregivers

For Physicians

For Therapists

For Surgeons

Treatments:

Women with lipedema face limited therapeutic options. Because the causes or drivers of disease onset remain unknown, currently available therapies are geared toward relieving symptoms and preserving patient health. 

More about treatments

FDRS: Goals of Lipedema Care and Treatments