Tuesday, April 9, 2019

Thank You Kathy Bates!

I just had the absolute pleasure of watching Kathy Bates (yes, THE Kathy Bates, Award winning Kathy Bates) testify before the Congressional Sub-Committee on Labor, Health and Human Services, Education and Related Agencies.

Kathy is the LE&RN (Lymphatic Education & Research Network) national spokesperson and she shared her personal story about surviving ovarian cancer, only to then be left with an incurable condition (Lymphedema).

Lymphedema is a secondary condition I have in common with Ms. Bates, and a condition that later stages of Lipedema patients all have in common with her.

I was in tears as I watched Ms. Bates greet the Sub-Committee, graciously thank them for the opportunity to speak before them, and then proceed to remove her jacket, revealing her stark black compression sleeves, as she announced, "I have Lymphedema."

This struck me as such a powerful performance. An Oscar worthy performance (yes, I went there). In a world so focused on appearance, a world especially critical of our actors, musicians, artists, and the like, here was this Hollywood Icon brandishing her compression sleeves like the fierce warrior that she is.

Ms. Bates shared personal information about surviving ovarian cancer, to then be told about this incurable disease, due to her surgeons needing to remove lymph nodes from her armpits in her fight against the cancer.

She talked about how over 10 million Americans suffer with Lymphedema, some with similar experiences to hers, the result of the efforts to cure their cancers.

She talked about some being born with Lymphedema, like a young girl named Emma Detlefsen, who  was born with Lymphedema in both legs, and who inspired Ms. Bates when she told her at a LE&RN fundraising walk across the Brooklyn Bridge, that she hoped "if she could do something hard for her, like walking back and forth across the Brooklyn bridge, maybe a smart doctor could do something hard for them, and find a cure for Lymphedema."

Ms. Bates stated those 10 million Americans suffering with Lymphedema and lymphatic diseases, are more than those suffering with MS, ALS, AIDS, Muscular Distrophy and Parkinson's disease - combined.

She explained there was no cure in sight, no approved drug therapies, and only 3 studies world wide seeking new treatments. She told the committee that the condition was misunderstood and misdiagnosed, and many suffer silently for years without the benefit of knowing what they have, while their condition gets worse.

The information Ms. Bates shared was mind blowing, 10 million Americans! But let me take a moment to mention, as this is a Lipedema blog, as mind blowing as that number is, Lipedema affects more than 16 million Americans, and it is even more challenging to find knowledgeable medical professionals.

Lymphedema (and Lipedema) can make you feel all alone, different from those you see around you. To quote Ms. Bates in one of my all time favorite movies (P.S. I love you), "So now, all alone or not, you gotta walk ahead.... Thing to remember is, if we're all alone, then we're all together in that, too."

We have to walk ahead, show this world what we are made of, show them we are warriors and we will not go quietly into the night, but we will stand together and fight! We will keep fighting until we are heard, research is done, better treatments are found and cures are discovered.

Here is the link to the youtube video (Ms. Bates goes on about the 2 hour 11 minute mark). Well worth the watch! Thank you to the Sub-Committee for hearing her, and all the others, who testified today.

P.S. - We Love You Kathy Bates.