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 different texture may be shallow or deep, and may be difficult to feel, especially if swelling is present. We are actively funding research that can identify tools to provide definitive diagnoses including genetic markers, blood and other markers, imaging, and other studies.
Patient History and Physical Exam
- 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*
*Added by Dr Herbst
Dutch Guidelines 2014
- Early lipoedema diagnosis and the RCGP e-learning course
- UK Best Practice Guidelines: The management of lipoedema 2017
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 liepdema.
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
Airport scanners (no really, some of us light up as we walk through them!)
Lymph Vessel Imaging
Lymphoscintigraphy - Currently used to rule out lymphedema
Imaging of Fat Content
DEXA (1, 2)
- Full-body Bioimpedence studies may help identify limb versus central fat deposition and swelling
Changes in Biochemical / Bio-mechanical Properties
Assessing blood capillary fragility
Water Volume Measurements
References (in development)
1 Dietzel R, Reisshauer A, Jahr S, Calafiore D, Armbrecht G., Body Composition in lipoedema of the legs using dual-energy X-ray absorptiomety: a case-control study. Brit J Derm. 173: 594–596; 2015
2 “Fat Distribution and Glucose Metabolism in Individuals with and without Williams Syndrome” (NCT01864304)