Lipedema: The Chronic Disease That’s NOT Obesity

Imagine going through puberty with “big legs” that are notably out of proportion with the rest of your body. Or maybe you’ve developed fat tissue on your hips and legs later in life, like after you have a baby, and all the while thinking it’s YOUR fault that it’s there. That you don’t have enough willpower, that you should diet strictly and exercise more and more, all that negative self-blame and sinking body image making you feel helpless.

But then imagine you receive a diagnosis for something called LIPEDEMA, a chronic medical condition where adipose (fat) tissue develops symmetrically on both sides of the body. It typically develops in the legs but can occur in the arms as well, and it usually stops at the ankle or wrist. This fat tissue is often resistant to diet and exercise, it can have a distinct texture that’s likened to rice or peas. It can often be accompanied by pain or tenderness upon touch, easy bruising (small capillaries and lymphatic vessels can get damaged from the pressure), and sometimes edema (swelling).

Suddenly you learn that this is NOT obesity, and it is NOT your fault.

Clients have said that their lipedema diagnosis is often a relief. FINALLY an answer as to why they’ve been struggling, uncomfortable, and having mobility issues for so long. An estimated 17 million women are living with lipedema in the U.S., and many of them aren’t even aware that they have it. Many doctors don’t yet know that this condition exists or it is not well-understood, and so diagnosis and finding treatment can be challenging to say the least. 

Luckily awareness, research, community support, and advocacy are increasing. 

When it comes to treatment of lipedema, there are a number of roads toward obtaining a better quality of life while navigating this disease. Decongestive therapy can help reduce fluid buildup, and depending on someone’s stage of lipedema, this can take the form of MLD (manual lymph drainage) or a pneumatic compression pump, bandaging/Velcro wraps/compression garments, tailored exercises, skin care, and diet changes to help with inflammation. 

Surgical options also exist for lipedema. Lymph-sparing liposuction can help remove the excess fat tissue while keeping the vital lymphatic network intact. This can help slow the progression of the disease and can also help reduce pain.

The folks at The Lipedema Project say it best: “With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed, that resources are invested in understanding this disease and how it can be treated, and that patients have the support, knowledge, and options to manage these chronic conditions.”

Here at One River, we are so fortunate to have Jaclyn, our occupational therapist, who specializes in helping to treat the symptoms of lipedema and tailors her treatments to each patient’s individual needs. She provides lipedema evaluations, manual lymph drainage, customized exercises to help with mobility and pain management, and can set patients up with proper compression garments and pneumatic pumps so they are empowered to take back their activities of daily living.

Know that you are not alone, that there is support and treatment available.

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