[MUSIC PLAYING]
JESSICA MEGA: Welcome, everyone.
Today, we have such
an important topic,
talking about lymphatic
diseases and lymphedema.
For me personally, today
is incredibly important.
I am the chief medical
officer at Verily.
And Verily is the
branch of Alphabet
that focuses on health
care and life science.
But across Alphabet, our
appreciation of both health
and disease continues to grow.
So I thank all of you
for being here today.
The other piece is
as a cardiologist
and having the ability
to work with Dr. Rockson
and the crew you're going to see
today has been a real pleasure.
And I think all of
us will walk away
with more knowledge
and more compassion.
So I'll introduce our
guests and then turn it over
to them for a conversation.
One thing I will note is we
will take questions at the end.
So please think along the
way of your questions.
And we certainly welcome them.
So to my left, we have Dr.
Stan Rockson, a cardiologist,
a professor at Stanford.
And you will learn and
hear about his true passion
for the disease we're
talking about today.
We also have Kathy Bates,
who needs no introduction,
an Academy-Award-winning
actress, a director,
and a philanthropist.
And I think her role in
championing lymphatic disease
has been remarkable.
And we have Bill
Repicci, who since 2011
has been the president and
CEO of a group called LE&RN.
And LE&RN has been
focusing on individuals
who have lymphatic
disease and lymphedema.
I should also note that he
spent 35 years in plays himself,
so maybe he'll provide
some color there as well.
So thanks again.
I will now turn it
over to Stan to tell us
a little bit about what we're
talking about when we think
about this set of conditions.
WILLIAM REPICCI: The issue
that we're going to talk about
is a very important part
of the circulation, one
that is commonly not
recognized because it's
working in the background.
And the problem is that
medical doctors don't
know much about it, either.
They should, but they don't.
As I mentioned, in
2007, I did a study
of the 110 medical
schools in North America
to find out exactly how much
time is spent on this system.
And in a four-year
medical education,
we learned about 15
minutes, if you're
lucky and go to a really good
medical school, 30 minutes.
I did bring something
for show and tell, just
to show you how
ludicrous that is.
This is a textbook on lymphedema
that we just re-edited.
This is what a well-trained
clinician should know.
It's 1,000 pages.
There's no way you can
cover this in 15 minutes.
We can't cover it in
five minutes, which
is what I've been allotted.
But let me give you just a
little bit of background.
So the lymphatic
system, I'm going
to use the metaphor
of a brick wall.
If I ask all of you to
imagine a brick wall,
and then describe to me
what you are looking at,
you're likely to
tell me something
about rectangular-shaped objects
that are overlapping, stacked
on one another, maroon color.
And I bet almost
nobody will tell me
about the white mortar that
sits around the bricks.
And yet we know
without the mortar,
you don't have a brick wall.
You have a pile of bricks.
The white mortar in the body
is the lymphatic system.
It is the part of
the circulation that
ensures that the local pond
in which every cell operates
has the right constituency,
has the right volume,
and is able to support
the health of those cells.
And the lymphatic circulation
passes through lymph nodes,
and the lymph nodes help
all parts of the body
to communicate to the immune
system when there is a threat,
whether it is a
toxin, or a bacteria,
or a virus, or anything
that the immune system needs
to respond to.
So without this vital
system, without the mortar,
everything will collapse.
The disease that we're
talking about today,
the common lymphatic
disease, not
the only one, but
the most common one,
is lymphedema,
which is basically
when the wall collapses
in a part of the body
because that part
of the body is not
functioning with normal
lymphatic constituency.
And basically, we
understand a lot
about why that condition arises.
We understand who's
at risk for it,
and we have treatments for it.
But the obstacle that we face
is that medical practitioners
are simply not aware.
Let me tell you just a few
of the contexts in which we
see lymphedema.
We talk about secondary
and primary lymphedema.
Secondary lymphedema
means that you're born.
Your lymphatic system is normal.
Everything is operating
well, and something
injures the system.
And you develop this
swelling problem
and this immune malfunction
in a part of your body.
That is secondary lymphedema.
And the most common cause
in the United States
is being treated for
cancer, because when
doctors treat
cancer, they remove
lymph nodes from the body.
They irradiate lymph
nodes, and they
damage the system in
a way that renders
it unable to function properly.
In the world at large--
and we're talking about
90 million people--
it is filariasis, which
is an infectious problem.
It's a parasite that attacks
the lymph nodes and destroys
them and causes a very severe
form of lymphedema called
elephantiasis.
Here in the United States,
probably 5 to 10 million
Americans have this problem.
Difficult to know because
doctors aren't writing
the diagnosis down, and if
they don't enumerate it,
we can't enumerate it.
But by projection and
by oblique references,
we think that that's
a fairly valid number.
In that 5 or 10
million cases, there
are perhaps 2% of
those who are born
with genetic causes
of lymphedema.
That is, the lymphatic
system is malformed,
or it is functionally
incompetent
because of the genetic
makeup of the individual.
Now don't mistake in-born
problems with congenital.
Some lymphedema that is
primary is congenital,
but some appears in
the teenage years.
Some appears in young adulthood.
And many cases appear
after the age of 35,
even though the defect is
present in the blueprint
of the body from birth.
So those are the
broad categories
that we're talking about.
Now just to show you how
ludicrous the problem is
that we face in medical
education and medical practice,
I recently saw a
patient, a woman
who has pretty
severe lymphedema,
swelling and deformity
of her limbs,
both lower
extremities, both legs.
She was treated
for colon cancer.
She had lymph nodes removed.
She had radiation therapy.
And for approximately a year
and a half, during which time
her legs were getting
progressively more enlarged,
none of the doctors
would acknowledge
that she had a problem.
And nobody certainly
gave it a name.
Eventually, through back
channels and talking
to people and other
individuals in the community,
she learned the name lymphedema.
She went to her doctor and said,
I think I know what this is.
This is lymphedema.
The doctor said, oh, no.
That only happens in the arms
to breast cancer patients.
It doesn't happen in the legs.
Preposterous, not even
in that 15 minutes
did this physician learn
that this can happen anywhere
in the body because the
lymphatic circulation is
everywhere.
Now Jessica said that
she's a cardiologist.
I'm a cardiologist.
I got interested in
this field because I'm
interested in understanding
how the circulation maintains
its integrity.
And when I went
through my training,
I can readily admit I didn't
know anything about lymphedema
until I chose to embrace
the lymphatic circulation
as an entity for research
and clinical care.
But I think it's vital.
It is vital not only that
cardiologists know about it,
but basically every
physician who purports
to take care of patients.
So we're hoping that those
of you in the room today
and those that are
watching this afterwards
will take a profound interest in
this problem, which is global.
And the impact on the patients'
lives is extraordinary.
It's not generally a
life-threatening condition.
It does not shorten
life, but it certainly
impacts the way in which
those individuals can
live their lives.
So this is something
we need to embrace.
We need to acknowledge it.
We need to treat it,
and eventually we
need to be able to
prevent it and reverse it.
So that's what I'll say.
JESSICA MEGA: Stan, thank you
for that incredibly impactful
introduction.
I, for one, will continue
to be a champion of the work
that you all are doing.
Kathy, you're here as a
spokesperson for LE&RN,
the organization
we talked about.
And I think everyone
here would really
like to hear about
your journey and how
you have found the
condition and what it's
been like working with LE&RN.
KATHY BATES: Yes, I think
I don't need a microphone.
But six years ago, I
had a double mastectomy.
And I knew what lymphedema
was before I had been
diagnosed with breast cancer.
I was more afraid of
lymphedema than I was
of living without my breasts.
My mother had it.
I saw the effect it
had on her left arm
when she had a radical
back in the '70s.
Her arm swelled terribly.
I had a friend that I knew had
lymphedema in his left arm.
He had had a melanoma
underneath his arm,
and they took tissue from the
damaged part and re-injected.
You know, so he
survived, but his arm
was extremely heavy, like wood.
He had seen enough doctors
in his life, he decided,
so he wouldn't go for care.
And it terrified me that I
would get this condition.
Sometimes, we used to
go driving in an RV.
And driving was
very hard for him.
His arm would swell terribly.
And we'd stop and get
fresh ACE bandages.
But sometimes, lymph would
ooze out of his fingers
because he was so
stubborn about it.
Anyway, I was really concerned.
I thought maybe I would
have a predisposition to it,
given my mother's history.
And I remember on
several occasions
really begging my surgeon.
Please, if the sentinel
node is clear, get out.
I don't want to have this.
I don't want to have it.
And I had the surgery.
And when I was in the hospital,
I was feeling strange, little--
it was almost like
an electrical storm.
I don't know if this is
lymphedema coming on,
but it certainly
felt strange to me.
And when I went in
for my first checkup,
he told me he had taken 19
nodes from this arm and 3
from the other.
Because of my career,
you've seen me enraged,
I mean, in several roles.
I think you should multiply
my reaction by about 100.
I went nuts, and
screaming, yelling, crying.
People came in the room
to try to calm me down.
There was a social
worker, speaking
in that social-worker voice.
Now just take a breath.
And I think I turned to her
like the exorcist, you know?
And I ran out of the building.
I left my niece
and my best friend,
and I ran out of the building
in the middle of July,
standing near the
Beverly Center.
It was so hot.
I still had my drains in.
I was holding this pillow.
And when I finally came
to my senses, I thought,
I can't walk home.
I don't want to get
any further damage.
So I was really, really enraged.
And as he told my
niece, he said,
lymphedema would be a moot
point if she doesn't survive.
I don't want to
malign my surgeon.
He's a good man.
His focus was on curing
me of cancer, period.
And, in fact, when I was
having my fit in the room,
he kept saying, I
cured you of cancer.
I cured you of cancer.
I mean, he believed
that so passionately.
That was his goal, and he felt
that he had accomplished that.
And I wouldn't be here
today without him.
I have to acknowledge that.
So I was pretty angry
for a long time.
And then through one
of my other surgeons,
I got the name Dr. Emily Iker.
And I found out I
could go have manual--
I did develop
lymphedema in both arms.
And they began to swell.
And I had pain and heaviness
and rashes and heat.
And so, anyway, I went to
her, very, very angry person.
And she was lovely.
And she said, that's
all in the past.
Now let's begin your new life.
She said, I have a
patient who is 105.
If you want to know about
the stock market, call her.
She dresses in Chanel
every day, so the future
is bright for you.
So then I became
involved with Emily.
She has lymphedema
in her right leg.
And that's why she became
involved and specialized
in the study of lymphedema
and lymphatic disease.
So I began a program with
her, going frequently.
And then I was
able to taper off.
And then Emily led
me to Bill Repicci.
And she said, I'm doing
this run-walk in Venice.
And I just don't
know how to do this.
And I thought, OK.
I figured she had
ulterior motives, finally,
when I figured out
what was going on.
And Bill and I met in New York.
And Bill gave me the numbers
that Stan has just described.
And then I got
really pissed off.
And I never have loaned my
name to any group such as this
over the course of my career.
But I couldn't say no.
I was so enraged.
And the more I learned about
it, and the more the fact
the doctors don't know, my
goal was to raise awareness.
And that's why I
love the name LE&RN.
And I just I thought
and I went to stand
you know and went to Capitol
Hill that first year.
I said, what's the deal?
Why can't we just go to JAMA
and say, get on the horn?
Talk to these guys.
Let them know what's going on.
Have them know what
to look out for.
And we tried that.
And you even wrote an
article that got turned down
in a couple of hours.
And, anyway, so it seemed
like Everest to me,
and that I would be going
without oxygen, all alone.
But then as I began
the journey, I
was relieved to know that
there are actually people
and have been people
for the last 15 years
working diligently
on research, working
on trying to raise
awareness, working
on trying to reach physicians.
And today, I'm relieved
that we are making progress.
I left New York.
We went to a cocktail
fundraiser, a very wealthy
couple, a woman
who's very involved
in research, [INAUDIBLE].
And it was fascinating to meet
with her and Dr. [? Diane, ?]
who is doing replacement--
you call it reconstruction?
STANLEY ROCKSON:
Lymph node transfer.
KATHY BATES: Transfer,
right, and Dr.
[? Shelly ?] [? Feldman, ?]
I learned so much from them.
OK, so get this.
So they had a lovely
dinner for us afterwards.
And I had my best
friend with me.
And she was seated next to one.
I wasn't next to them.
And it was a very
well-heeled group.
And she was talking to the lady.
And she noticed that the
lady wasn't eating her dinner
and just pushing
her food around.
And she seemed upset.
And Jennifer asked her,
she said, so, you know,
why are you here and whatever?
And the woman just
said, oh, my God.
Now I know what I have.
I've had it for years.
And Jennifer was so--
she's very shy, anyway.
So I said, where
does she have it?
You know, I wanted to know all
the details for our purposes.
But she didn't ask.
But I was astounded
that someone who
had all the resources and
the money to be educated
and to find the best doctors
had been living with this.
And the one other thing--
I don't want to take
up too much time.
But the numbers that Stan
told me began to disappear.
You have to excuse me if I get
a little emotional about this.
The numbers disappear.
And, you know, when you
meet people one on one,
and you listen to
their story, you
begin to empathize with
what they have to deal with.
And what I learned was,
from these people--
I just met Rosalie today,
who has primary lymphedema
and has it throughout her
body for the last 30 years.
And Rose wanted to
be an Irish dancer.
It reminds me of [? Purlan ?]
[? Hines ?] who was one
of people who emailed us,
a young woman who suddenly,
at the age of 20, her
leg blew up, dancer,
just about to blossom.
Suddenly, her career was over.
But instead of giving up--
and this is what I love about--
when you really get
to know somebody,
you see what they're made of.
And after going through
the horror, the denial,
the struggle, she realized.
And she said, I realize that
if I continue to deny this,
that the legs of future
generations would be lost.
We have another woman, Karen
Bingham, up in Nova Scotia.
Six of her siblings have it.
Her father had it,
huge, huge legs.
And she didn't know what it was
until the internet came along.
And then she began to
realize other people are
out there who have this.
So she went on Facebook, and
she posted a picture of one
of her legs,
because she figured,
you know, a picture is
worth a thousand words.
And she heard from Facebook
right away and said,
you have to take this down.
It's undesirable to look at.
And in all fairness
to Facebook, they
have a policy about nudity.
And so someone had complained
that here's this woman showing
their nude leg on Facebook.
But things then began
to roll for her.
She posted this response
on Facebook to her friends,
and they got pissed off.
And they talked to other people.
She developed a seminar for
people up in Nova Scotia.
She got local publicity.
Then she got national publicity.
She and I have been DMing.
She went to a gym.
A doctor told her, just don't
do anything for two years.
Lie in bed.
And she said, but
this is not living.
She did it.
But she said, this isn't living.
She went and learned how
to be a real estate agent.
Then she went to a gym.
That was hard to find.
She finally found a guy
who worked with her.
And she does kickboxing now.
And she is very vocal
about what's going.
She's joined our group.
She's a wonderful
spokesperson for us.
And there's one other
young woman that I want--
young girl, really--
to talk about,
Emma Detlefsen, who's
one of my favorites
that I've stayed in touch with.
And she actually came
with us to the awards
that we got in
Washington to stand up.
She has it in her
legs, was born with it.
And she, at 7, right, went to
the New York State legislature.
She appeared there.
And there was a bill
there, that's still there,
that was languishing
for research.
And after she appeared,
it was bipartisan support.
One of the Congress
people there said,
we have to help these children.
And then when I think she
was about-- was it eight,
or was it the same year?
WILLIAM REPICCI: Yeah,
right after that.
KATHY BATES: Right after that,
Bill has a wonderful walk-run
over the Brooklyn Bridge, which
I'm going to get to one day.
We have ours in Venice.
And she was our youth
advocate, right?
And she wrote a speech.
And I have to tell you,
in those seven years,
because of the cellulitis,
which is an infection that you
can very easily have with
any kind of nick or cut--
I've had it.
I thought I had a very
mild case of lymphedema.
But Stan has explained to
me, if you got lymphedema,
you've got lymphedema.
And I had to go
into the hospital
and was there for almost a week.
And they sent in, you know,
tropical disease specialists
and put me on some
kind of antibiotic
that nearly killed me.
And they just didn't get it.
But imagine being a child.
And in eight years of your life,
you've been to the hospital
eight times, with doctors
who still don't really get it
or believe it.
She said something at
the end of her speech
that will stay with me forever.
She said, if I can
do something hard
for me, like walk back and forth
across the Brooklyn Bridge,
maybe a smart scientist can
do something hard for them
and find a cure for
this in my lifetime.
The people that I have
met through this program,
their courage, their
struggle to live with this
has been so touching to me.
The doctors, however, I
would like to encase just one
leg in concrete.
It sounds like I'm going
all Annie Wilkes on them.
But in my business,
imagination is the key.
You have to use your imagination
because only with that can
you begin to empathize.
Now I won't put you
through it for today.
But as a thank you to me
for having been here today,
tonight when you go to
bed, just lie in bed.
Close your eyes.
Settle.
Breathe.
And imagine that your
right leg, your left leg
is so swollen that it
will never go down.
It's like your leg is
going to be in jail
for the rest of your life.
You're going to have
to wear compression
sleeves, compression garments,
if you can afford them,
if they fit.
You're going to have to
buy two pairs of pants.
You're going to have to
buy two pairs of shoes.
If it's in your
right leg, you're
going to have a hell
of a hard time driving.
There are so many just
physical problems alone,
they can seem daunting.
It's psychologically
debilitating.
It's emotionally debilitating.
I have talked to people who
have this who have been--
I use the word
ostracized by doctors.
I think doctors
are so turned off,
they just don't want them there.
There's a woman in
Russia, Tatiana, who
had it when she was in her 20s.
And the doctor
literally told her,
you should be glad you have
all your arms and legs.
Get out of here.
So that's what we're up against.
And that's what I've tried to
do is to educate physicians.
You know, somebody notices I've
got my compression sleeve on.
And they'll say, what is that?
I'll say, well, how long
have you got, because I just
want to take every opportunity.
And you just never know.
[? Seana, ?] you
were saying to me
when we went to
physical therapy,
one of the physical
therapists there has it.
And she came out
and talked to me.
And you just never know where
you're going to meet people.
So I thank you all
for being today.
I hope I haven't
gone on too long.
You know, just to
finish up, for me,
who spends a lot of time
trying to figure out
how to be other people,
although I wish I didn't have
lymphedema, it's really
nice to be able to be me
and to hopefully do
some good in the world.
And thank you all so
much for being here.
It means the world.
JESSICA MEGA: Let's
just take a moment.
[APPLAUSE]
I have to say, your
passion is so evident.
And I can see why they call
you all the dream team.
And I do think this
idea of empathy
and sympathy across
the board is something
that we're all striving for.
And thank you so much
for sharing your story.
KATHY BATES: You're welcome.
JESSICA MEGA: The
other thing that's
very clear, as I got
to know Bill recently,
I can see why you're
immediately drawn to learn.
And I think for
all of us, it would
be helpful to hear a little
more about your mission.
And I'm going to
ask you to share
some of the sentiments you were
talking with me about earlier.
When we have a certain
entity like lymphedema,
whether we call it a condition
or a disease matters.
And your insights there
were incredibly impactful.
So thank you again
for being here.
WILLIAM REPICCI: Yeah,
yeah, a real pleasure,
I get to follow Kathy Bates.
How's that here?
KATHY BATES: Don't
sell yourself short.
WILLIAM REPICCI: What's
funny, I mean, this team here,
really fated to be.
I mean, lymphedema
and lymphatic diseases
have been ignored
for a long time.
When I first met Kathy,
Dr. Iker is the one
who first put us together.
We met in New York.
And we talked for
a couple of hours.
And Kathy was listening
intently and at
the end of the
conversation said,
well, this is all
fascinating, Bill.
I have to think about it.
I'm not sure if I'm ready
to be a spokesperson.
This is all new to me.
But, you know, we'll
follow up at a later date.
But I have to go
right now because I
have a TV show I need to go to.
And I said, well, what TV
show is it you're doing?
And she said, well, Andy
Cohen's "Watch What Happens."
And I did this.
I said, Andy lives
upstairs from me.
And I ran into Andy in
the elevator yesterday.
And I asked him if he would
be the very first member
of LE&RN's honorary board.
And he said, sure,
Bill, whatever you want.
And Kathy stared at me
and said, that's the sign.
That's the sign.
It was meant to be.
I'm LE&RN's spokesperson.
And that's how it all
began and kicked off.
LE&RN was established
20 years ago.
This is, in fact,
our 20th anniversary.
Stan was available,
Dr. Rockson, right
from the very beginning of it.
The way it all
started, a woman dealt
with what women and families
had dealt with for eons,
but not taken the next step.
She had a child who had a
primary lymphatic disease.
Doctors didn't know
anything about it.
They didn't have
any hope for it.
They didn't know
how to treat it.
She decided that that
wasn't acceptable
and began the process of
creating this organization that
would then focus mainly on
the whole research issue,
because then there was
very little research.
So how do you get researchers
into the field to begin really
looking at this issue?
By the time I come around, which
is six years ago, I come in.
And I'm interviewed
for a job that
didn't give the name
of the organization
or mention the word lymphatics.
So when I got done and they
told me what this was about,
I actually turned
the job down when
it was offered to me
because I knew nothing
about lymphatics or lymphedema.
That was not my background.
I had a specialty in
developmental disabilities
and infectious diseases
to some degree,
from working in
Kenya, et cetera,
but this was unknown to me.
After turning the
job down, I went out
and started talking
to people and talked
to some of the most
sophisticated, wealthiest, most
educated people I knew.
None of them knew what
I was talking about
until I described it.
And invariably after
I did describe it,
the response was,
my mother has that.
She had breast cancer.
Her arm was like this.
It has a name?
Doctor's wife, raising
her, like, in the air,
saying, whatever
you're talking about,
I've had it since I was a child.
My doctor says it's
called drainage issues.
What became fascinating
to me and why
I went back and
took the job is I
began to see the
marketing implications
of what was going on here.
As Dr. Rockson and
Kathy have said,
we estimate there could be up to
10 million people in the United
States alone that
have lymphedema.
I started putting
the numbers together.
How many people in the United
States had multiple sclerosis?
500,000, how many have AIDS?
300,000, perhaps a
million are HIV positive.
How many have ALS?
About 30,000.
When all was said and done--
Parkinson's, about a million--
it turned out there are far more
people with lymphedema than all
those other diseases combined.
How is it possible
that we know so much
about all those other
diseases, and yet
this disease we know absolutely
nothing about, including
most people who have it
don't know that they actually
have this disease?
So a lot of our effort
has been peeling back
the onion of what are
all those obstacles?
Well, there are a multitude.
Dr. Rockson mentioned
one right off the bat.
And that's the fact
that if doctors
don't learn about this
in medical school,
they're not passing
that information
on to their patients afterwards.
The fact that most of the
people in the United States
who have lymphedema have it as
a result of cancer treatment,
they're being treated
by oncologists
who very often their sense
is, I've treated the cancer.
If you develop lymphedema,
find a therapist.
Don't complain.
I've saved your life.
And unfortunately, too many
people have taken that advice
and gone ahead and done that.
We have the problem of
the word lymphedema.
It's a difficult word.
People don't remember it.
We talk about TB, MS, ALS.
How many people here can
tell me what ALS stands for?
You can't.
The reason is you don't need to.
It's too complicated.
If you had to, it would
put you at distance
from knowing anything
about the disease.
At LE&RN, we start using LE,
and we use it pretty uniformly
as an acronym for it.
I was saying to Jess--
we were talking earlier.
When it comes to it,
what do you call it?
I think doctors
very often, you need
to feel very much
like God, considering
that people are coming to
you, looking to be cured.
So what happens when somebody
comes to you with something
you don't know how to treat
and you don't know how to cure?
Well, you have a
couple of options.
Either, you're not
God, or perhaps
this isn't that important.
I think there's a tendency
to lean toward the latter.
I think using words
like condition
becomes a euphemism which
softens the importance of what
this disease is.
And I was saying
with Jess, I talked
to a very
strong-headed woman who
runs a company for compression.
She has lymphedema as a
result of breast cancer.
And during our
conversation, I said, well,
you know, really, when you
have a disease like lymphedema,
blah, blah, blah.
And she stopped me and
said, what did you just say?
I said, well, I said, when
you have a disease like--
I don't have a disease.
I have a condition.
How dare you say
I have a disease?
And I said, well,
you have a disease.
And condition is a euphemism.
Look disease up
in the dictionary.
There's a definition for it.
Call Dr. Rockson.
Have a conversation about it.
I called Stan, you know,
to check and make sure,
absolutely.
Her response after
that was, are you
telling me I had the disease
of cancer and in treating it,
they gave me the
disease of lymphedema?
Now I'm twice as
angry as I was before.
Conditions you just
have to live with.
Diseases you cure.
I want a cure.
I thought, well,
how fascinating.
Even language like that can be
a major factor in a movement.
The other thing is I
met a couple of women
when I first took this job.
And I said, what is it
like to have lymphedema?
And the first response
was, well, Bill,
there are worse
things in the world.
And I said, well, then I
just made a huge mistake.
And I should be going and
doing those things, which
are more important,
rather than doing this.
And then they said, do you want
to know what it's really like?
And they began saying the
things that Kathy just said.
OK, imagine you have
15 pounds of weight
on this part of your body.
You don't have the
other part of your body.
Your spouse never wants to
have sex with you again.
People mock you when
you're out on the street.
You end up in the hospital
several times a year
with infection that you
don't know whether they're
going to cure or not.
You love to travel,
but now you're
afraid to because high altitudes
exacerbate your lymphedema,
and on and on and on.
And they finally get to the
end of saying, you know what?
Lymphedema is worse than cancer.
Cancer they cure.
Lymphedema is forever.
The whole idea of having
a disease that you
have to treat for
hours a day leaves
you debilitated for
the rest of your life.
And although we do
say in and of itself
it doesn't lead
to death, I mean,
the fact is I get
more memorials donated
to LE&RN because of people
who have had infections
that antibiotics could no longer
treat, who died as a result,
or people who gained
so much weight because
of their lymphedema that
it debilitated them.
And it caused other things
to occur that actually
lead to a premature death.
On the other hand,
though, there are
lots of things we don't
deal with that we don't
die from that impact
our quality of life
to such an extent that we give
a great deal of attention to.
This hasn't been one.
And a big part of
our job right now
is how do we develop
that activism
so that people come forward?
I talked to Dr. Anthony
Fauci down at the National
Institutes of Health.
And Dr. Fauci was key
during the AIDS epidemic.
And he said he went
to NIH back in 1984.
And at that point,
he said, NIH was not
very interested in AIDS.
It was affecting
marginalized populations,
and there was no excitement
about necessarily getting
overly involved in this.
However, because of
groups like ACT UP,
Gay Men's Health
Crisis, et cetera,
that came forward
and said, we are not
taking no for an answer,
shortly after, NIH
began putting 10% of their
budget, $3 billion a year,
into AIDS research.
20 years later, it was a
treatable disease where
people could live normal lives.
Fast forward to us.
We got Senator Schumer
to put in a $70 million
appropriations request
for lymphatic research.
The first seven calls
I got at the office
were people saying it
was a big step backwards.
We were wasting our time.
There would never be
a cure for lymphedema,
and we were wasting our
time looking for one.
I was shocked that the
population of people
that have this disease have
been so cowed by everything
they've lived with
up to this point
that they didn't even have hope.
We need people to have hope.
So with our organization,
we focus now
not only on research,
but certainly
on education and advocacy.
Actually, two of the people
here are from Citizen Group that
rebranded our organization.
We used to be called the
Lymphatic Research Foundation.
Now we're called Lymphatic
Education and Research Network.
And they helped rebrand
from Citizen Group
to give us the new name
and expand our mission,
because we need to do it all.
We need people to be angry.
We need people to be activists.
We have chapters all around
the world at this point.
And you'll see a little
film that Kathy hosts
about World Lymphedema Day.
We created World Lymphedema Day.
And the idea was we need
more than awareness.
We need research.
We need it to be
international, and we
need to make this an
international priority.
So LE&RN at this point
has a whole variety
of programs that not only
feed into researchers
and doing research, but also
for patients themselves,
to educate them through
symposiums, asking experts,
et cetera, but also by allowing
them to congregate and feel
that incredible embrace of
another person with the disease
that they thought they were
the only one in the who had,
because it's only then that you
get that power that one needs
to know I'm not alone.
We are empowered.
We do have a right
to aspire for more.
And we're not going to
stand still and be quiet
until we actually get
what we are searching for.
And that is we want new
treatments and cures.
And that's going to take money.
And we need government
to support us in that.
JESSICA MEGA: Excellent.
[APPLAUSE]
KATHY BATES: If we
want to win this fight,
we need to stand together
and educate the world.
[MUSIC PLAYING]
All of us who've had
the courage to speak
about our personal
battles with lymphedema
are making a real difference.
All across the US, even in
Russia, Australia, and India,
our stories are giving
others hope, as they
realize they're not alone.
[MUSIC PLAYING]
SPEAKER 1: I support
World Lymphedema Day.
SPEAKER 2: I support
World Lymphedema Day.
SPEAKER 3: I support the
World Day of Lymphedema.
SPEAKER 4: I support
World Lymphedema Day.
SPEAKER 5: I support
World Lymphedema Day.
SPEAKER 6: Join
World Lymphedema Day.
SPEAKER 7: I support
World Lymphedema Day.
SPEAKER 8: I support
World Lymphedema Day.
SPEAKER 9: We support
World Lymphedema Day.
SPEAKER 10: We support
World Lymphedema Day.
SPEAKER 11: I am
[? Chelan ?] from Nigeria,
and I support the
World Lymphedema Day.
Yay!
[MUSIC PLAYING]
