I have lymphedema, I developed it right after
a bilateral mastectomy almost four years ago.
Lymphedema is a disease
where the body's lymphatic system is damaged
creating swelling, loss of mobility, and serious infections.
Those first couple of days when I was recovering
in the hospital, I could feel these strange
feelings in my hands and in my forearms.
Instead of standing by
and waiting for a cure, she took on a new role.
Today, Kathy Bates serves as a national spokesperson
for the Lymphatic Education and Research Network.
And I make this promise to you today: I will fight for us.
Kathy Bates has even gone
to the halls of Congress to raise awareness.
We lobbied 65 congressmen and senators.
We had doctors with us who could explain
the science behind what we're facing.
Seeing a celebrity like Kathy Bates come out
and say this is something that's painful,
I'm putting this out there because I want others
to do the same, then maybe I can do that.
(applause)
More suffering from this than MS, Muscular Dystrophy,
ALS, Parkinson's and AIDS combined,
and the average physician spends about 15 minutes
during their training on this disease,
which means it is probably one of the most underdiagnosed
and under reported syndromes in all of medicine.
And I don't say any of this to scare you,
but I really do want people to be aware
because, for example, when you say that doctors
don't know how to diagnose it, there was a patient recently
who had a hysterectomy, and because lymph nodes
were taken during that process,
developed lymphedema in both legs.
And she went to her doctor and he said,
"There is no such thing as lymphedema, go home,"
"stand on your hands and that way"
"you can drain the fluid from your legs."
Yeah, there's primary lymphedema,
there's secondary lymphedema.
Primary can be genetic. That's right.
Secondary is usually pursuant to a surgical procedure
to, particularly cancer procedures, so it can happen
even with very young children if there's
a genetic component, and that's its onset.
Now, Kathy has a ton of fans, but she is the number one
fan of a 10-year-old girl named Emma.
Take a look at why.
Emma Detlefsen, our youth ambassador,
worked a real miracle last year when she appeared
before the New York State Legislature.
Hi, I'm Emma, and I have lymphedema.
Her presence so moved the lawmakers,
they realized that something had to be done
to help those of us suffering with lymphatic diseases.
Kathy sent her a personalized letter
and it just thanked her for showing up and said that
the reason we are going to get money from the state
was because of Emma's appearance.
The end of that letter is like great foreshadowing.
It says I hope someday we meet.
And they did just that.
Months later, Kathy and Emma met for the first time.
You've got your purple cape on.
Yeah. You look beautiful!
(applause)
Emma Detlefsen, who has primary lymphedema,
works as an advocate with Kathy to raise money
for awareness, and she actually joins us
right now on Polycom, so Emma, how are you?
I'm good. (applause)
So, Emma, tell us what it was like,
first, to get to meet Kathy?
Well, I was nervous at first because she is
like a movie star, but it was really exciting
and we had a good time in Washington, DC,
and it was a special moment for my family.
I understand that you were born with lymphedema
in your legs, so what do you do to take care of that?
I wear my garments during the day and I wrap at night,
and I go to my therapist once a week,
she's a certified lymphedema therapist,
and I use my pump when my lymphedema gets really bad.
Thank you for talking about this.
(applause)