Actress and director Kathy Bates is celebrated for her Oscar-winning performance as the obsessed fan Annie Wilkes in Misery as well as her roles in the hits Titanic and American Horror Story. And Bates currently stars as the owner of a weed dispensary on the Netflix sitcom Disjointed. But her most important role these days is that of an activist: Kathy brings attention to the painful condition of the lymphatic system called lymphedema.

In 2003, Bates was diagnosed with ovarian cancer, and after chemotherapy and surgery, the cancer went into remission for many years. Unfortunately, in 2012, she found out she had breast cancer. Knowing that breast cancer runs in her family, Kathy elected to have a double mastectomy. During the mastectomy, the doctor removed 22 of her lymph nodes. When she woke up and was lying in the hospital bed, she knew something was wrong with her hands and arms. Sadly, the star was diagnosed with lymphedema at the age of 69.

Our bodies have over 600 lymph nodes whose duty is essentially to trap toxins; without the lymph nodes, toxins wreak havoc on tissues in the body causing swelling, fatigue, infections, and it can be very painful. Worse, it can lead to deadly sepsis. “People need to be able to get treatment before they have to lose a limb–or their lives,” Kathy insists. Fortunately, Bates describes her pain as “very mild” as compared to what other lymphedema patients endure. Lymphedema is incurable and progressive, but it can be managed with compressive garments and manual lymph drainage which initially requires frequent visits to a therapist.

Tragically, many doctors aren’t required to learn much about the condition. This is an astonishing fact considering lymphedema sufferers outnumber people with MS, ALS, AIDS, and Parkinson’s combined. There are a whopping ten million sufferers in the United States alone–many of which are veterans returning home from the battlefield. Kathy was struck by how little attention is paid to the disease. “How can something that affects ten million people be ignored and be so invisible? And why are people afraid to come forward and say, ‘Help! We don’t have a quality of life here.’ … I want to help everybody who’s suffering with this.”

Kathy decided to become a spokesperson for the Lymphatic Education & Research Network, and she fights for more research and more therapists to meet the demands of sufferers. She revealed:

“Having to constantly find a [therapist] if I’m working in a different town, and I need help, and I don’t know who to call, it’s difficult. And if I don’t take care of it myself, then my arms do begin to hurt, and they do begin to swell. And so, basically, I’m mad as a wet hen. And so I want to do something about this. And I don’t know if any research that we can do will help me finally, but I do want to help people out there who are suffering with much worse cases of lymphedema than mine. I just feel very passionate about this and I’m proud to be working on it.”