Lipedema is a progressive, chronic medical disorder that is characterized by increased nodular and fibrotic adipose tissue on the buttocks, hips and/or limbs. It is a loose connective tissue disorder that primarily affects women and reveals itself at puberty, pregnancy or menopause, typically. Lipedema often presents itself differently in each case during times of changes in hormone, weight and shape. The lipedema tissue is usually very heavy and can be painful. Unexplained bruising is common in all stages and impaired mobility often occurs. Comorbidities regularly occurring alongside lipedema are venous disease, ehlers danlos (hypermobile joints), non-lipedema obesity, lymphedema, sleep apnea and polycystic ovarian syndrome to name a few. Intervention with regular diet, exercise and bariatric surgery does not eliminate the lipedema tissue itself.
Often mistaken for obesity and rarely diagnosed, lipedema is estimated to affect at least 11 percent of all women. Body acceptance and lipedema awareness advocate, Beth Rylaarsdam, known across social media as Curvygirlbeth, is an example of a classic case of Lipedema with her hips, thighs, buttocks, upper calves and upper arms affected. She is devoted to representing women with Lipedema while educating about the condition and creating awareness while promoting acceptance of oneself despite enduring this progressive, often painful condition, that currently has no cure.
Lipedema is Not Obesity or Lymphedema
Lipedema is characterized by a bilateral buildup of adipose tissue in the lower body . Its cause is evasive and knowledge of this disease is minimal within the medical community and the general public. Lipedema sufferers often have different proportions on the upper and lower halves of their body and at later stages disfigurement is a concern. Lipedema often carries constant pain and women who experience this are surprised to learn that others don’t have pain as well
In contrast to obesity, where fat occurs throughout the body and can be lost with proper diet and exercise, the main characteristic of lipedema is that additional diseased fat is localized in the lower half of the body with the arms affected sometimes, as well. Yet, the hands and feet are often spared until later stages when lymphedema develops, too. Lipedema differs from lymphedema, which most often is characterized by swelling that affects just one side of the body congenitally or as a result of impacted lymph nodes due to injury or commonly during/after cancer care.
The Causes of Lipedema Are Not Well Understood
Whereas other conditions like obesity and lymphedema can occur in men and women, lipedema occurs almost exclusively in women. Research on the causes of lipedema is still limited even though it was reported in 1940 at the Mayo Clinic. Scientists theorize that it is connected to surges of female hormones, since it often begins or worsens during puberty, pregnancy, and menopause. Genes may also play a role, since the condition tends to run in families.
The adipose tissue involved in lipedema is different from ordinary fat. It is filled with fluid, which suggests that the body’s lymph system is not functioning correctly to drain this fluid. Also, in the later stages of lipedema, small blood vessels that are stretched thin by the excess tissue begin to break. This is why those with lipedema bruise easily.
Despite all that we have learned about lipedema so far, there is still much more to discover, including which specific genetic or environmental mechanisms may trigger the condition and how to eradicate it or control progression.
Lipedema Awareness and Acceptance
Since lipedema has no known cure, it is important to spread acceptance and awareness of this rarely diagnosed condition. Many women are grateful to hear that they are not alone and that many others are dealing with the challenges of lipedema. Connection is key. Reach out and introduce yourself if you have been diagnosed with or suspect you have Lipedema. (add Calendly here)
A diagnosis of lipedema does not have to be cause for despair. Many women with lipedema are otherwise healthy. There are many support groups out there and many ways to keep living a full, rich life. Connect for news and updates about lipedema as well as my message of body acceptance for those affected by this condition. For more uplifting and positive updates, keep an eye on my speaking engagements and podcasts in the news section.
Lipedema Resources
*** More info: Standards of Lipedema Care in the United States: pubmed.ncbi.nlm.nih.gov/34049453/
Living with LIPOEDEMA – exclusive Interview with @curvygirlbeth
- Subcutaneous Adipose Tissue Diseases: Dercum Disease, Lipedema, Familial Multiple Lipomatosis, and Madelung Disease – Endotext – NCBI Bookshelf
- Spotlight Lipedema Podcast Part 1
- Lipedema foundation https://www.lipedema.org/
- Fat disorders research society https://www.fatdisorders.org/
- Talk Lipoedema https://www.talklipoedema.org/
- Dr. Karen L. Herbst. http://www.lipomadoc.org/
- Dr. Emily Iker https://lymphedemacenter.com/
- Survey Outcomes of Lipedema Reduction Surgery in the United States https://journals.lww.com/prsgo/fulltext/2021/04000/survey_outcomes_of_lipedema_reduction_surgery_in.38.aspx
- I’ve GAINED!! A THRIVING New Perspective: https://www.youtube.com/watch?v=P2gTjqauw_c
