Diagnosing Lipedema

Currently, the best way to diagnose lipedema is performing manual inspection by a trained physician in conjunction with patient history. Upon palpation of the fat, the healthcare professional may feel an atypical texture to the fat, such as 'grains of sand or rice', tiny pebbles or pea-like nodules and/or large strands of nodules. However, the atypical texture may be shallow or deep and may be difficult to feel, especially if swelling is present. We are actively funding research to develop tools to serve as an initial diagnostic assay, or confirmatory test - such as imaging tests, genetic, blood and other biomarkers. 

Patient History and Physical Exam

Patient history and interview

Physical exam

Dr. Herbst diagnostic criteria published in 2016, Lipedema: A Relatively Common Disease with Extremely Common Misconceptions

• Almost exclusive occurrence in women*
• Bilateral and symmetrical manifestation with minimal involvement of the feet*
• Minimal pitting edema*
• Negative Kaposi–Stemmer sign*
• Pain, tenderness on pressure*
• Easy bruising*
• Persistent enlargement after elevation of the extremities or weight loss*
• Arms are affected 30% of the time**
• Hypothermia of the skin**
• Swelling worsens with orthostasis in summer**
• Unaffected by caloric restriction**
• Telangiectasias**

* Original Wold/Hines criteria 1940 and 1951

** Added by Dr Herbst

Dutch Guidelines 2014

• Publication
• Guidelines in the Netherlands
• Patient Version

UK Guidelines

• UK Best Practice Guidelines: The management of lipoedema 2017
• Lipoedema diagnosis and the RCGP e-learning course

German Guidelines 2015

• German Guidelines in German
• Google Translate to English version of short guidelines; Google Translate to English version of long guidelines.

The original criteria

• Published in 1951 by Wold, Hines and Allen, the first 7 sub-bullets above

See additional resources

FUTURE Diagnostic tools

The Lipedema Foundation aims to put data behind the diagnosis and is supporting many endeavours to definitely diagnose lipedema.

Genetics

Biomarkers

There's an App for that!

• App that compares images of one's legs to a database of diagnosed legs
• Leg shape assessment, along the lines of the "Like a Glove" brand jeans fitter to determine "big legs"

Soft Tissue Imaging

• MRI and specialty MRIs such as Sodium MRI (Na-MRI)
• CT
• Ultrasound
• Airport scanners (no really, some of us light up as we walk through them!)

Lymph Vessel Imaging

• NIRFLI
• Lymphoscintigraphy - Currently used to rule out lymphedema
• SPY Elite

Imaging of Fat Content

• DEXA

Bioimpedence

•        Full-body Bioimpedence studies may help identify limb versus central fat deposition and swelling

Changes in Biochemical / Bio-mechanical Properties

• Na-MRI

Assessing blood capillary fragility

• Angiosterometer

Water Volume Measurements

• Streeten Test