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Diagnosing Lipedema: Are Doctors Misdirected or Simply Disinterested?

Why is the fat deposition disorder that affects roughly 10-17 million people – mainly women – so egregiously underdiagnosed or misdiagnosed?  We get to the bottom of this medical mystery and the findings may surprise you.

An estimated 11% of the female population suffers from lipedema, yet the chronic condition is still surprisingly being widely misdiagnosed or underdiagnosed by many doctors. In fact, many doctors have never even heard of the perplexing disorder that disproportionately affects millions of women.  Others unwittingly misdiagnose their frustrated patients as being obese when many lipedema sufferers are actually underweight. A 2004 study conducted by Stanford University shockingly revealed a majority of U. S. medical schools spend less than 80 minutes teaching about the body’s crucial lymphatic system.    Other physicians often confuse lipedema with lymphedema, a lymphatic disorder that possesses very similar symptoms, but is quite different in origin and treatment trajectory.  It also doesn’t help matters that there is still no standardized exam or blood or urine test to determine a definitive diagnosis.  Like changing tires on a moving vehicle, the medical community finds itself currently grappling with patients’ mounting frustrations, while just beginning to learn more about this common lymphatic disease. To say the fight against lipedema is a work-in-progress is an understatement.  

Currently, doctors are relying on physical characteristics and symptoms to properly diagnose patients.  The causes of lipedema also have the medical community collectively scratching its head.  Past studies suggest lipedema is likely a congenital condition, yet it is triggered hormonally with the onset of puberty with symptoms worsening during childrearing and menopause.  As the medical community gains more perspective and access to lipedema cases, thanks to advocacy and support groups that have brought the disorder to the forefront of medical discourse, doctors are finally beginning to recognize more subtle characteristics to help them make more accurate diagnoses.  Currently, they’re relying on the telltale, sand-like texture of the skin in the beginning stages that eventually transcends to pebbles, then small stones in the latter stages.  They’re learning that while fat cells decrease with proper diet and exercise, a person living with lipedema will never rid them of their fat cells regardless of healthy lifestyle modifications.  An unfair and unlucky fact of life with lipedema.   

A Perplexing Past Leads to a Hopeful Future

Most lipedema patients are diagnosed by doctors specializing in treating the vascular system or by the burgeoning breed of lipedema specialists.  Dr. Stanley Rockson, professor and researcher at Stanford University, is one of the few progressive lipedema specialists in the world spearheading the search for fundamental clues about this bewildering condition that strikes 11% of all women, while trying to better understand the disease’s pathology.  Currently, he is studying the analysis of tissue samples from the lower body (legs, buttocks, tummy) to better understand why its adipose tissue accumulates at a rapid, disproportionate rate as opposed to the rest of the body.  Dr. Rockson is also testing anti-inflammatory medicines that have proved successful in treating other lymphatic diseases and hopes his commitment to research will eventually lead to a conclusive cure(s), other than liposuction, for lipedema sufferers.  

To learn more about the progression and on-going developments taking place in the lipedema community, we encourage you to check back on our blog or visit The Lipedema Foundation at for the latest updates.

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