June is National Lipedema Awareness Month

June is National Lipedema Awareness Month

Lipedema (or Lipoedema as it is spelled in the European community) is a progressive chronic disease of fat tissue that affects more than 11% woman and less than 1% of men worldwide. This adipose tissue disorder is characterized by bilateral symmetrical swelling of the legs, thighs and hips.  While the upper torso usually remains the same, the hips and thighs usually start enlarging disproportionately to the rest of the body.  Clinicians and patients commonly confuse Lipedema with general obesity or even Lymphedema.

Lipedema is often called the “painful fat syndrome” as abnormal fat cells cluster together and expand under the skin. Interstitial fluid increases between the clusters creating pain to touch or when standing.  People in the later stages often complain about pain when being touched where pockets of fat press on nerves.

Signs and Symptoms of Lipedema

What is Lipedema
Four Stages of Lipedema

Since Lipedema is a progressive disease it is important to diagnose early and start treatment right away!  Does your body look like one of the four stages of Lipedema above?  If so, please know this is a chronic disease and is not your fault! But, you can do something to help your condition!

Do you recognize these symptoms:

  • Lower body is disproportionate to your upper body
  • Symmetrical appearance of affected limbs, but the feet are still normal
  • Tenderness or pain in parts of you hip, thigh or leg areas (pea to fist size lipomas)
  • Bruising happens easily (even if you didn’t bump into something)
  • Upper arms may be affected (and would be symmetrical)
  • Skin may spongy at first then lumpy or bumpy
  • Diet and exercise have no effect on your lower body
  • Skin folds or pads may have appeared over the knee or ankle
  • Loose joints and ligaments (particularly in the knees)
  • Swelling that when elevated does not provide relief (hot weather makes it worse)
  • Hormonal changes make things worse (puberty, childbirth, menopause)
  • Pant sizes keep going up, prefer to wear skirts instead

If so, make an appointment with your clinician soon to discuss diagnosis criteria and treatment plans!  It’s never too late to make lifestyle changes to help treat your Lipedema condition!

If you are still not sure, go ahead and take a Lipedema quiz designed by Catherine Seo and her group at the Lipedema Project. 

Lipedema Body Types

Lipedema Foundation Brochure
Click on photo to read brochure.

In addition to the traditional four stages of Lipedema there are also several body types.  Some people have larger thighs and hips, but no ankle cuffs (cankles) while others may have thighs, lower legs, and ankle cuffs.  Sometimes upper arms are involved too.  See the different Lipedema body types on the Lipedema Foundation page.

I purchased a copy of the book “Lipedema – The Disease They Call Fat: A Clinician’s Overview” for my doctor for education and to keep on hand should he treat people like me in the future.  Consider a copy for your doctor in addition to some great website resources listed below.

Read more about Lipedema on our site.  If you identify with Stage 4 (like me) also check our information on Lymphedema too.

Remember, it’s never too late to get help and there is a whole community of people like you and me wanting to help you with your Lipedema and/or Lymphedema needs.

Help spread the word that June is National Lipedema Awareness Month!

To your improved health!


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