During an acting career that has spanned almost five decades, Kathy Bates has played dozens of memorable characters, from the obsessive fan Annie Wilkes in the film Misery, for which she won an Oscar, to the Unsinkable Molly Brown in Titanic. Now Kathy has taken on a new real-life role, raising awareness about a disease that affects 10 million Americans, including herself. It’s lymphedema, a chronic condition in which excess fluid collects in tissues, causing swelling that can be severe and debilitating. From meeting with members of Congress to making the keynote address at the Harvard Lymphedema Symposium and appearing on Dr. Phil, Kathy is completely committed to giving a face to this forgotten disease. She recently spoke with My Hometown Health to share her story and her passion.

When did you first learn you had lymphedema?

It was 2012. I had been diagnosed with breast cancer and chose to have a double mastectomy. To tell the truth, I was almost less afraid of losing my breasts than having my lymph nodes removed, which can cause lymphedema. My mother developed lymphedema after a radical mastectomy, and I saw firsthand how it broke her spirit. So I asked my surgeon to leave as many lymph nodes as possible. Right after I woke up from the surgery, I started feeling symptoms almost immediately, and it terrified me. Then, during my first post-surgical checkup, I found out that 19 lymph nodes had been removed from my right armpit and three from my left.

What was your response?

For weeks I was both depressed and enraged. I thought my life was over until my surgeon found Dr. Emily Iker, who saved me both physically and mentally. She specializes in the treatment of lymphedema, and she’s been such a great help, educating me about the disease and helping me get it under control. Fortunately, my lymphedema is less noticeable, but I still experience pain, fatigue and swelling. I also had a bout of cellulitis that required a hospital stay. I often have to wear compression sleeves on both my arms to keep the swelling down, especially when I fly. But my experience doesn’t really compare to the many stories I’ve heard of people who have been debilitated by this disease.

Tell us about LE&RN and your decision to become its national spokesperson.

LE&RN stands for Lymphatic Education & Research Network. It’s an international non-profit organization that fights lymphedema and other lymphatic diseases. Through Dr. Iker, I met Bill Repicci, the president and CEO of LE&RN. When he told me the numbers about lymphedema, my jaw just dropped. There are more people in the United States with lymphedema than people with multiple sclerosis, muscular dystrophy, AIDS, Parkinson’s and ALS—COMBINED. That adds up to more than 10 million Americans, but few people are educated about it. I decided right then I wanted to work with LE&RN and become their national spokesperson.

What are you hoping to accomplish in this new role?

Our mission is twofold. First we want to raise awareness. Many doctors think lymphedema is a cosmetic condition or not even a disease at all. Did you know that during four years of medical school, doctors receive a total of just 15 to 30 minutes of training about the lymphatic system? And because lymphedema is usually not covered on state licensing exams, doctors don’t have the training to make a timely diagnosis, which can be delayed, sometimes for years, while the disease progresses.

In addition to increasing awareness, we’re also raising money for research, which is very promising! Dr. Stan Rockson of Stanford University and a co-founder of LE&RN has a clinical trial underway that is opening the door to effect drug therapy to potentially reverse lymphedema. Through LE&RN’s research grants, Dr. Karina Yaniv and her colleagues at the Weizmann Institute in Israel grew lymphatic cells in the lab. And at theUniversity of Virginia, researchers have just published a paper showing the possible impact of lymphatics in the treatment of both multiple sclerosis and Alzheimer’s!

How can people get involved in supporting this cause?

Go to LymphaticNetwork.org and make a donation or become a supporting member for $10 a month. Join one of 13 state chapters of LE&RN. Follow us on Twitter @MsKathyBates or @LymphaticNet. Go to YouTube, search for “Emma Detlefsen” and watch the story of this brave 10-year-old girl who was born with lymphedema and is now the Youth Ambassador for LE&RN.

Any final thoughts?

Working with LE&RN has turned out to be an unexpected gift for the third act of my life. I’ve learned so much in the past four years. As an actor, my job is to embody fictional characters and famous people. But now, in this new role, I can be myself and have an impact in the real world. It truly is a privilege, and I’m proud to lend my name to a cause I care passionately about.

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