EDS and Lipedema
We’re finding Lipedema (aka Lipoedema in the UK) which causes seemingly unavoidable weight gain and fat deposits, especially but not only in the legs to be a fairly common comorbidity / co-occurring condition in the hypermobile community, as well as in the Mast Cell Diseases (MCD) community.
Likewise Dercum’s Disease. (I suspect MCAS may help to drive the latter, but just my hunch, to be clear.) So I added this section in November 2021. Find my Main EDS Resources Page <- here.
This short resource list is blatantly stolen with permission from the author of More Than Fat:
- Dr. Karen Herbst – http://www.lipomadoc.org/
- Lipedema Project – lipedemaproject.org
- Fat Disorders – https://www.fatdisorders.org
- Lipedema Foundation – https://www.lipedema.org/
- Lipoedema Ladies – https://www.lipoedemaladies.com/ (UK)
- Lipedema – https://www.lipedema.net/
- Lipedema Simplified – http://lipedema-simplified.org/
Additional articles of interest:
- Key signaling networks are dysregulated in patients with the adipose tissue disorder, lipedema Nov 2021 Ishaq, Bandara, Morgan et al
- Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS? – Jeffrey Lubell via Health Rising Dec 2021
- The Lymphatic System, Overview – an Animation via Alila Medical on YouTube (four minute explainer) 2019
- Understanding Fibrosis in Lipedema: Inflamed Subcutaneous Adipose Tissue (SAT), and Nodules 2019 Karen Ashforth MS
- Accurate diagnosis and self-care support for women with Lipoedema 2016 Williams, MacEwan
Please feel free to apprise me of more at H2OhTWIST @ gmail.com thank you. Last updated Feb 27, 2023.