Lipedema was first described 70 years ago but there is still a lot that is unknown. This makes it difficult to diagnose and teach both doctors and patients about the condition. Doctors in Europe have been more progressive in identifying, diagnosing and treating lipedema. As a result, in Europe lipedema has been formally recognized as a disease enabling both education and support for treatment. In the United States lipedema is a relatively unknown condition in medicine. Most physicians have never heard of it and those that have, oftentimes lack additional knowledge to diagnose, guide or help patients. It is considered a disorder in the United States, rather than a formal disease. This is an important distinction because this characterization limits societal, emotional, medical and financial (e.g. from insurance companies) support.
Nevertheless, there is growing attention about lipedema around the world. Current estimates are that 1 out of 9 women have lipedema. That means 11% of adult women, or approximately 14 million women have lipedema in the United States alone. The chances are that you have seen a woman with lipedema in the last 7 days of your normal activities. Organizations have been started to create more awareness for lipedema, particularly in the United States, and to support medical research. (An excellent starting point with a wealth of information is FDRS at www.fatdisorders.org). Social media has become a pivotal tool for patients with lipedema. With Facebook groups in every state, patients are becoming connected empowering them to learn about lipedema, support one another and improve their quality of life.
In the United States, the evaluation and diagnosis of lipedema is problematic and difficult. Because it is not recognized as a disease, lipedema is not taught as part of the usual medical school curriculum and it is often, unintentionally, misdiagnosed as other diseases (e.g. obesity, lymphedema, venous insufficiency, blood clots). Additionally, insurance companies in the US do not recognize the diagnosis or treatment of lipedema. A few US-based physicians have become well-informed about the disease and are trying to heighten awareness in the medical community. Some physicians have clinics doing research with lipedema patients and have become recognized as a world expert. (For example, Dr. Karen Herbst at the University of Arizona. http://treat.medicine.arizona.edu ). A small but growing number of doctors have learned about the disease and are able to assist patients. Additionally, experts have developed information packets that patients can obtain and provide to their own primary care doctor in an effort to professionally and respectfully inform their doctors about the disease. (Contact FDRS at www.fatdisorders.org and request their physician information card)