Kathy Bates’ health problems didn’t end after her breast cancer went into remission. Soon after completing her treatment, the actress developed lymphedema, a common “souvenir” after lymph node surgery but one that often goes undiscussed.
“I was terrified of getting it,” Bates, 70, told PEOPLE at the WebMD Health Heroes event on Tuesday.
The American Horror Story star said that lymphedema, the swelling of arms or legs because of a blockage in the lymphatic system, affects more than just cancer patients, but it doesn’t get much attention.
“It affects more people than ALS, MS, AIDS and Parkinson’s combined. Ten million Americans. But people just don’t know about it,” she says.
Part of the problem, Bates says, is that doctors see the swollen limbs and assume that people are just overweight, not dealing with a painful medical condition.
“Some doctors think it’s cosmetic and not life-threatening,” she says. “Doctors spend 15 to 30 minutes on the entire lymphatic system in medical school, so if someone goes to their general practitioner with swollen limbs, pain and heaviness the doctor will have no idea what it is. So it goes undiagnosed and the disease progresses for years and gets worse and worse.”
Bates worked with LE&RN, the Lymphatic Education & Research Network, to find a doctor who understood the condition.
“I’m feeling great,” she says. “I’ve lost a lot of weight and it’s really helped with my symptoms. I just still have to wear compression sleeves or guard against nicks and bug bites because that can lead to sepsis.”
But Bates knows that not all lymphedema sufferers are as lucky to have that support, so she became the national spokesperson for LE&RN to spread the word. She was honored at the WebMD event as the 2019 “Game Changer” for her work.
“When I heard those figures I got involved,” she says. “I got very pissed off because it was unfair. I’ve been asked to lend my name to a cause [before] and I’ve made it my policy not to do that, but this is the first one I’ve felt strongly about.”
And beyond supporting the cause, Bates says that for both lymphedema and cancer, the best thing people can do for friends or family who are dealing with the conditionsis to stick by them.
“I think going through breast and ovarian cancer you feel like you’re a burden,” she says. “I’ve lost friends because some friends want to help but don’t realize it’s a long process. So they sort of drop out. It’s a problem. I think families try to do the best they can but it’s very difficult to help.”