Lipedema is a condition first described by Drs. Allen and Hines of the Mayo Clinic in Rochester, Minnesota. It is a disorder affecting the subcutaneous fat primarily in the extremities. Though the actual cause isn’t known, lipedema is influenced by hormones. In fact, lipedema rarely manifest signs prior to puberty; usually, it occurs around a major hormonal change, such as pregnancy or menopause, and it occurs mostly in women. Though much misinformation surrounds this disease, recently there have been efforts to foster understanding and increase diagnosis and treatment for people who suffer from its effects.
Lipedema disorders are typified by the area of the body in which the disorder manifests. There are currently fives types of lipedema:
Besides the areas where lipedema occurs, there are also several stages of progression of the disease itself.
Stages II and III can also lead to secondary lymphedema. Lymphedema is typically a separate condition affecting the lymphatic system. Primary lymphedema usually only affects one extremity, causing swelling and pain as the body can no longer properly drain lymph fluid. Lipedema can cause secondary lymphedema or lipo-lymphedema, where the swelling extends throughout both affected limbs. Additionally, lipedema and secondary lymphedema can feed one another, exacerbating the symptoms caused by each disease.
Normal subcutaneous fat differs from lipedema fat in a few ways. The lipedema fat is disproportionate, it accumulates out of sync with the rest of the body, and only occurs in select areas. Lipedema sufferers frequently experience a phenomenon known as two body syndrome, where their upper and lower body sizes are vastly different – up to 10 clothing sizes different! Lipedema fat accumulates at an accelerated rate, and is extremely resistant to weight loss methods.
As discussed in the stages of lipedema, the fat goes through inflammatory changes that change the consistency of the fat itself. Initially starting off softer than normal fat, eventually the inflammation firms up the deposits, causing it to feel more like a bean bag in consistency and creating nodules and valleys which deform the body.