Kathy Bates’ presentation at the American Cancer Society’s Birthday Ball, Beverly Hilton, June 6th, 2015
I survived both ovarian and breast cancer. There are probably a lot of us cancer survivors here in the audience tonight. We share a special pride in having fought and won the battles that so terrified us. Thanks to a century of hard work by the American Cancer Society and its volunteers more and more of us are still here enjoying the gift of life.
But I want to share something with you that is even more personal to me than my cancer diagnosis, something that affects my life every day and will for the rest of my life. During my double mastectomy lymph nodes were removed from my armpits and I developed lymphedema in both arms.
For those of you who don’t know what that means—since my lymphatic system was compromised by surgery, protein rich fluids build up in my arms causing them to swell. It also makes them prone to recurrent infections.
I was devastated at the news that after surviving a close brush with death I would have to live with this debilitating disease for the rest of my life. I need regular treatments with my physician, Dr. Emily Iker. I must perform daily self-massage to keep it under control. I wear compression sleeves especially on airplanes. I can’t lift anything over 5 pounds. Often my arms are sore and painful.
Then I was astounded to learn that ten million Americans suffer with this disease. More than ALS, muscular dystrophy, multiple sclerosis, Parkinson’s and AIDS—COMBINED. US Military Veterans who have suffered battle trauma develop lymphedema. Primary lymphedema is genetic and must be managed from birth onward. In many cases lymphedema can become horribly disfiguring.
But I want to emphasize this is not a cosmetic issue. While the lasting effects, the discomfort and limitations of lymphedema may be invisible to others, it is an incurable disease. Besides quality of life, one’s health is negatively affected in a multitude of ways such as cellulitis, a bacterial infection that occurs commonly in those with lymphedema. Cellulitis is life threatening if left untreated.
But most astounding of all, people don’t know about lymphedema, even those who are suffering with it. Outside the cancer realm, doctors and nurses have never heard of it, don’t know how to treat it or guide their patients to qualified therapists. Worse there are not enough trained therapists to treat patients. As a result millions of people are suffering in silence too humiliated to even discuss it—remarkably even hiding it from their loved ones. Lymphedema is cancer’s dirty little secret.
So I decided to become the spokesperson for LE&RN, The Lymphatic Education & Research Network. A non-profit organization established in 1998 dedicated to fighting lymphatic diseases through education, research and advocacy.
LE&RN funds research fellowships, has a patient registry and tissue bank, publishes the only peer-review scientific journal in the field, offers scholarships to therapists and connects patients with the world’s top treatment authorities.
In 2010 LE&RN awarded a research fellowship to Guy Malkinson, Ph.D., in the lab of Dr. Karina Yaniv at the Weizmann Institute of Science in Israel.
Last week the team reported a major discovery. They revealed how the lymphatic system develops in embryo and for the first time managed to grow lymphatic cells in the lab!
We are making progress every day, but we have a long way to go. If you know someone who is suffering from lymphedema encourage them to come out of the shadows. Don’t wait until the disease has progressed and is harder to treat. Please direct them to LE&RN’s website because awareness is the first step, as you well know.
That is why it’s critical to support the American Cancer Society. Without its commitment over the last century, I might not be here tonight.