In 1993 a lymphedema patient receiving Combined Decongestive Lymphedema Therapy, consisting of six weeks of Manual Lymph Drainage and around-the-clock short-stretch bandaging, teamed up with her European-trained therapist and co-founded the Northwest Lymphedema Center. Up to this time the medical community was oblivious to treatment options other than pumps and compression garments. Although Manual Lymph Drainage had been the treatment of choice in Europe for over sixty years, it was not recognized by doctors and therapists in the U.S. Insurance companies were unwilling to offer any kind of reimbursement options and patients were left to their own devices, often unable to get an accurate diagnosis, let alone treatment.
The patient was Jane Gordon, who happened to work for a major insurance company. She and her father, Roger Olmsby, prepared all of the forms and applied for 501(c)(3) non-profit corporation status with the IRS. As of September 30, 1993, the Northwest Lymphedema Center became a reality: a full-fledged information and resource center for lymphedema patients and their families. The NWLC mission statement was “Helping others understand and meet the challenges of lymphedema.” Through Jane’s efforts, King County Blue Shield was the first insurance company in the Seattle area to cover lymphedema treatment.
Jane’s therapist was JoAnn Rovig, one of the first therapists in the United States, and the first therapist to open a clinic, MLD Associates, in the Northwest. JoAnn trained in Austria, Australia and Germany and is a breast cancer survivor herself who has managed to successfully keep her own lymphedema under control. JoAnn was the first president of the Northwest Lymphedema Center and volunteered her time to conduct support group meetings, self-care workshops and produce three self-care videos–of which there are over 12,000 in circulation throughout the U.S. Over the years as a patient educator and patient herself, JoAnn discovered there were two very vital missing components to mainstream lymphedema management programs — diet and exercise. In 2005, JoAnn went back to school and is now a Nutritional Therapy Practitioner as well as a Lebed Method Exercise instructor.
Lynn Fass, R.N. was one of JoAnn’s first lymphedema patients. Lynn, the current president of the Northwest Lymphedema Center, also recognized the need for expanding lymphedema awareness and providing educational self-care programs for patients. Following her own treatment, she attended the Casley-Smith training course in Australia, and later took advanced training with Guenter Klose. She worked as a therapist in JoAnn’s clinic for several years and has been donating her time as a consultant and co-educator for the quarterly patient self-care classes.
The self-care classes, which are now available in streaming video on the Northwest Lymphedema Center website, have been the center’s greatest contribution to the lymphedema community. It is essential that anyone struggling with lymphedema have access to good information. It is only through the patient’s own involvement and understanding that successful management is possible. Every patient needs to believe they can get better. With diligent self-MLD the lymphatic system will remodel. Yes, there are patients who no longer find it necessary to bandage, use a pump, wear night wraps or even wear daytime compression garments. It’s not to say, however, they don’t have limitations, but they understand and accept those limitations, knowing they are in control of their condition and lymphedema no longer has to control their life.