Kathy Bates Raises Awareness for Lymphedema Awareness and Research

Anna Hatch

This article is the last in a series highlighting the accomplishments of Research!America’s 2017 Advocacy Award honorees who will be saluted at a dinner in Washington, D.C., on March 15. More details can be found here.

An estimated 10 million Americans live with lymphedema—that is more than those living with multiple sclerosis, muscular dystrophy, ALS (Lou Gherig’s disease), AIDS and Parkinson’s disease combined. Yet, despite its prevalence, lymphedema (LE) does not receive the wide-spread attention and federal support like other diseases. 

Kathy Bates, award winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson, is raising awareness for lymphedema. “You say the word AIDS or breast cancer and everyone immediately knows what it is. But when I say lymphedema and start to tell them about it, their eyes glaze over,” Bates said. She engages with policymakers, scientists and physicians to increase support for lymphedema and lymphatic disease research.

Research!America is honoring Bates with the Isadore Rosenfeld Award for Impact on Public Opinion, which recognizes individuals who have worked effectively to deliver medical or health research advocacy messages to the public.

Bates has publicly shared her fight with lymphedema, since announcing her diagnosis at LE&RN’s 2014 Walk for Lymphedema & Lymphatic diseases. Bates underwent a double-mastectomy to treat breast cancer earlier that year. The operation removed 22 of her lymph nodes. Bates learned about her lymphedema diagnosis early. “I started feeling symptoms right away in the hospital. It was a strange kind of pain that moved around in my hands sort of like lightning.” Some patients, however, do not experience symptoms until years after surgery.

A patient’s experience is both painful and disfiguring. Lymphedema causes arms and legs to swell due to fluid imbalance in the lymphatic system, and can occur in one or multiple limbs. Those born with hereditary lymphedema may experience symptoms anytime from birth until much later in life. There are also many causes of secondary lymphedema including trauma, infection, radiation or surgery; the disease is commonly found in breast cancer survivors who have undergone radiation therapy or surgery to remove lymph nodes. The diagnosis can be a large blow to all cancer survivors who have already fought for so much. Bates says, “We face a lifetime of psychological and emotional damage which no one fully comprehends, sometimes, even those doctors who treat us.”

Bates opened-up about her struggle with lymphedema on CBS Sunday Morning inviting correspondent Lee Cowan to accompany her on a doctor’s appointment for treatment. Bates wears compression sleeves to help reduce swelling in her arms and avoids activities that exacerbate symptoms, which include plane travel and hot temperatures.

Bates actively engages with the scientific community. She gave the keynote address at a 2015 National Institutes of Health meeting that was aimed at drawing researchers’ attention to lymphatic diseases. Bates has also talked with Research!America board member Dr. James Madara, Executive Vice President and CEO of the American Medical Association, about the importance of lymphedema education during medical training.

Robust funding is critical for research. Bates has been working with Senator Charles Schumer (D-NY) to improve federal funding for lymphedema and lymphatic disease research. 

 “I didn’t know what I was saying yes to [as LE&RN spokesperson], and the more I learn about [lymphedema] the more angry I am.  I feel I have to do something about it, and if I can use my platform as an opportunity to bring awareness then that is what I want to do,” Bates said. “Millions of Americans are suffering needlessly in silence.”

Anna Hatch is a Research!America Communications Intern.

Comments

What an honor to have you as the spokeswoman for LE&RN. It took 10 years before I was diagnosed with lymphedema in both my legs. The doctor said it was venous insufficiency but an astute friend told me otherwise. I live with "L" as best I can and do some things well and others not. At age 72 I feel differently than someone in their 30's. When all is said and done I am vain and struggle to go to a pool and be seen in a swimsuit.

Congratulations to Kathy Bates, and a big thank you for being our (lymphedema sufferers) spokesperson!

I would never wish LE on anyone, but thank God(dess) for you to be the person to get it, Kathy. In our 'fame culture', it takes someone that is well known to many to make the kind of impact that you are making! Hooray for you for rising to the occasion to take up the fight the way you have. You have shown great leadership. I hope that you will one day come to one of our conferences in British Columbia, Canada so that we can honor you and be inspired with your conviction of making a difference for everyone living with LE. You rock!

Dear Ms. Bates,

Thank you so much for all of your efforts to get the work out about lymphedema. We have needed a spokesperson such as you for a long time. Your work is greatly appreciated by those of us with lymphatic diseases. Living with lymphedema is not an easy life but having awareness increased in Society and particularly within the healthcare setting is encouraging.

I thank you for dedicating so much time to help this cause while dealing with lymphedema yourself. I am sure there are days when it is not an easy thing to do. ❤

CATHY, congratulations on this great award! I was the teacher of Tiffany Sherwin Detlefsen and Nick Detlefsen, her husband. They are the parents of Emma Detlefsen, and as I remain quite close with the family, I have been hearing so much about you. Thank you so much for all that you're doing to call attention to this unfortunate illness. And thank you so much for the care and respect you have shown to this family. Much love and respect to you!! Jim Lemire

Thank you so much for having the courage to step forward and reveal to everyone that you too suffer from Lymphedema. Because of you, awareness has grown in a way that might otherwise have taken years.
I hope you know how grateful we all are to you.

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Public sentiment is everything. With public sentiment, nothing can fail; without it nothing can succeed.
Abraham Lincoln