July 22, 2021

Go check out Thriving with Lipedema. This blog describes living with lipedema, from a patient who also has HATS.

June 4, 2021

June is Lipedema Awareness month.

On June 1, I recorded a video for Lipooedema Friends International--not about the disease, but about something that brings me joy in life, writing. Now, I'll share a few things that are challenging about lipedema.

  • Today, as for many days, I woke up with significant lower back pain. Lipedema fat is painful fat. 
  • I get tired more easily than I feel like I ought to. Of course, my dysautonomia causes that, too. And if you look at the side effects of my medications, you'll see that quite a few of them have drowsiness listed.

Screenshot 20210301 120559March 7, 2021

Yesterday was World Lymphedema Day. And March is Lymphedema Awareness Month. Our first exposure to lipedema came at The Mastocytosis Society's 2019 Annual Conference. I've had a friend with lymphedema (also spelled lymphoedema), secondary to cancer, for more than a decade, but I had no idea I could be experiencing the same thing. 

A few points from that and other conferences:
  • Lipedema is a lymphatic disorder, at times hereditary
  • It tends to be bilateral, whereas lymphedema is often unilateral if it is caused by damage to one set of lymph nodes
  • Lipedema, if untreated, can progress into lymphedema
  • Lipedema is at times a comorbidity to mast cell disorders, such as Mastocytosis, Mast Cell Activation Syndrome and Hereditary Alpha Tryptasemia Syndrome (HATS). It is unknown how they are correlated.
Lipedema causes me daily pain, despite medication. It also takes up an hour of each day, while I use a machine for lymphatic decongestion. I also practice swimming, recumbent biking, rebounding on a mini-trampoline, and wearing graduated compression.
Two Facebook groups I've enjoyed are