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♪♪
This Viewfinder episode is supported by
UC Davis Health System.
At UC Davis, the lives we touch inspire us.
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[wind blowing]
♪♪
>>>Free flight's the oldest kind of
model airplane competition.
The idea is to do with how long the airplane
stays up in the air.
>>>We got people from probably 15 or 16
different countries.
>>>I'm from Australia actually, Brisbane,
but I do think that this is probably one of
the best flying fields in the world.
Ready?
That's a good one.
>>>Malcolm Campbell says this dusty spot 40 miles
northwest of Bakersfield is a perfect place for their
annual world championship competition.
But as he and his other model aircraft
aficionados discovered,
it's also a place that could potentially
severely threaten their health.
The field is filled with the fungal spores
that cause Valley Fever.
>>> Nice little walk in the park.
[laughter]
I came here first in 2011, it was green and lovely but
then we turned in 2012, it was quite dusty.
>>> Malcolm flew his model plane
and took photos of the competition.
Three weeks later the symptoms hit.
>>>Shivers, shakes, coughs, really awful feeling,
high temperatures.
And um- sore lungs.
>>> Malcolm had caught Valley Fever.
Technically known as coccidiodomycosis...
named after the spores Malcolm inhaled
while in Lost Hills.
California and Arizona are the primary states
where the fungus coccidiodes is found.
The fungus grows when the soil is wet,
and breaks apart in dry conditions.
The microscopic spores blow around in the dust.
>>>And if you breathe the wrong cupful of air,
it can impact in your lung and set up housekeeping
and it changes into a golfball lookin' affair
and that thing grows like crazy.
>>> It's estimated that 150-thousand people
in the US get Valley Fever and
nearly 200 people will die from it each year.
Reported cases have skyrocketed
700 percent since 1998.
Surprisingly experts say 60 percent of people infected
with Valley Fever won't ever know they had it.
About 40 percent end up with
flu-like symptoms like Malcolm.
People from areas outside the endemic regions
are particularly susceptible.
>>>So you might say, well, it's kind of similar to
other kinds of pneumonia but it is a particularly
difficult kind of pneumonia because it leaves the person
exhausted, fatigued for weeks at a time.
The amount of time lost at work and to school for
somebody who has this is much more prolonged than
somebody who had a typical case of bacterial pneumonia.
>>>It took me a good six months to feel
reasonable afterwards.
>>>They did X-rays and they found a shadow there and
it turned out to be what's called a granuloma.
And a granuloma is just a calcified lump about,
oh, half an inch in diameter.
>>> Unless his immune system gets compromised,
he'll likely never have symptoms again.
But there is no cure.
That ball of fungus sphereals will be
in his lung forever.
>>>There were four Americans in New Zealand at the
competition and they said, oh you've got Valley Fever.
And I said, oh, I don't think so,
it just feels like the flu.
And I went back to Australia and they said, yeah,
you've had the flu so we'll give you some antibiotics.
>>> Malcolm's friends were correct...
and his doctors were wrong.
It highlights the mystery and misdiagnosis
of Valley Fever.
A little known disease with symptoms
that appear to be better-known ailments...
like bacterial pneumonia, tuberculosis,
the common flu and even cancer.
♪♪
>>>I felt really weak and I couldn't even
like step on one foot.
This is so hard! My fingers are hurting.
>>>9-year-old Emily Gorospe's brush with Valley Fever in
2012 began with a diagnosis of bacterial pneumonia.
>>>It was the very first weekend of May,
and she woke up from her sleep just not feeling good
and she described it as her stomach not feeling well
and then she was just really tired that weekend
and that whole week and she had a cough
that wouldn't go away.
♪♪
Valley Fever is very common around here and
I knew that with her fatigue, with the cough,
with the rash that we probably were
looking at Valley Fever...
but no doctor would say that.
When we took her back again, finally, there was a
doctor that said this isn't pneumonia.
But he knew just by looking at the spot on the X-ray,
he recognized it right away that it was Valley Fever.
>>> Valley Fever was first discovered in Buenos Aires
in the late 1800s and then a few years later
in the San Joaquin Valley.
In 1938 researcher Ernest Dickson made the connection
between the fungal disease and what was then a
mystery illness impacting people in
Central and Southern California.
In the 1940s more than a quarter million soldiers in
the Western Flying Training Command were tested as
part of a study...
leading to much of what is known about the disease today.
>>>I kept on asking my mom, why did Valley Fever pick me?
And she didn't know the answer.
I guess it just- I breathed in and it just
went into my lungs.
>>> Emily and Malcolm fall into that 40 percent
of people who come down with symptoms but are able
to keep the fungus in check in their lungs.
But for others, the cocci fungus does not stay put.
It can spread to other parts of the body causing
everything from skin lesions to serious joint pain...
or worse.
>>>And if it spreads, particularly if it spreads
to the brain or the meninges that cover around the brain,
then that is a disease that is going to have huge
consequences for that person for their entire life.
>>>I'd like to say come speak to me.
I got a story for you.
I literally felt like I was actually dying and
for someone whose never had any health problems,
I've never felt that-
the feeling of being so sick but
I was pretty sure whatever this is,
it's not pneumonia and I am dying.
>>> Gina Potter didn't know it at the time,
but while she was treated for bacterial pneumonia the
Valley Fever fungal spores were ravaging her body.
She did know something was very wrong.
>>>I asked my family member to take me to
the emergency room again and when I went,
I whispered to her, "make them do a chest CT,"
which is a CAT scan of your chest,
"make them do an MRI of my brain,"
knowing I work in the medical field so I just knew what
they needed to do but they weren't doing it and I said,
"make them," and I said, "if you have to scream
at them and yell at them, and you have to be mean,
I don't care, do it and make them admit me."
>>>Gina had what's known as Cocci Meningitis.
The fungus had spread to her brain.
For an unlucky 3-5 percent of Valley Fever victims
the spores spread, or disseminate
to various parts of their body.
The results can be debilitating or deadly.
>>>But it has disseminated all throughout your body.
Your bones, it's in your bones, it's created
blockages in your spine and in your spinal chord um-
it's uh- in your ears and they said to me um-
it's also behind your eye sockets and you have about
hundreds of hemorrhages in your eyes right now and
you will be going blind unless we can stop it.
>>>They had the treatments that they gave her and for
some reason they were always scheduled late at night and
y'know, I don't even remember what the heck it was.
It was the most evil stuff I've ever seen.
>>> The evil stuff was powerful anti-fungal
medicine Amphotericin B...
injected directly into the brain.
>>> When they injected it- immediately after,
my whole body is just shaking like- it was tremors.
Just... uncontrollably.
And you just start burning up,
like you're actually in a fire.
And it was horrible and I was begging for help and
there was nothing they could do to relieve those things.
>>>You don't really think in depth what she's going
through until you've actually seen, you know,
her in person, or see her in the bed and see her
that she's got her shades on because the lights
are bothering her and her- so much swelling
in her brain that she's seeing things, you know.
It's- it's sad and it's scary.
>>>Yeah, especially with her personality,
so spunky and festive and crazy and then just to
see her just barely even able to walk and it's hard.
>>>I had a radiologist tell me,
"get ready to tell your friend goodbye," and...
>>>Oh my gosh.
>>>...that he had never seen a case so severe.
>>>So...
>>>And you're in the medical field.
>>>Yes.
>>>So when someone tells you that, you take it seriously.
>>>Yes.
>>> But Valley Fever in its early stages
isn't always taken seriously.
Even in communities in Arizona or California's
San Joaquin Valley where the fungus
is found throughout the soil.
What they've heard is oh it's just like the flu.
And your immune system can fight it unless
your immune system is low.
That's not always the case.
There are very healthy people who get it
and can't fight it off.
>>>Kathy Terrell's brother Max was a healthy,
active 56-year- old who contracted Valley Fever.
It was misdiagnosed as Tuberculosis and spread
throughout his body... he died five months later.
>>>It's horrible to watch.
I would not wish it on Osama Bin Laden himself
if he were alive.
I would not wish this disease on anyone.
>>>It's that bad, huh?
>>>It's that bad.
>>>For those few people that are going to get
severe illness, the faster they get the correct diagnosis,
they have the better chance of having a better recovery
rather than a prolonged recovery if it takes
two or three months to get the diagnosis.
>>>Unfortunately, a lot of those patients are
misdiagnosed for months with bacterial pneumonia or other
causes of pulmonary disease before cocci is considered
an ideology of their symptoms and by then they're
referred to Infectious Disease or one of the
pulmonary specialists and treated for cocci.
>>> Misdiagnosis is just one of the challenges of
Valley Fever.
Because people respond so differently to the disease,
and anti-fungal drugs can have negative side-effects,
there is actually disagreement on treatment.
>>>We treat basically almost everyone whereas in Arizona,
they're more selective: they try and look for
people that seem to have risk factors for doing poorly
before they initiate therapy.
Um... we don't have data that proves whose approach
is actually best.
>>>We don't even know if early treatment
alters the course.
Um- we've long speculated that but it's never been
proven in a randomized trial the way we've known
bacterial pneumonia responds to antibiotics,
patients get better faster.
For cocci, some people think that early treatment
actually may alter the immune response enough
that symptoms are prolonged.
>>>I'm half Filipino, my dad was born and raised
in the Philippines and moved to Chicago,
met my mother, got married and they had me.
>>> One thing Valley Fever experts do know...
people like Jerry Galang are more likely
to get a worse case of Valley Fever.
The disease attacks non-Caucasians,
especially Filipinos at a much higher rate.
>>>I was doing some yard work with a- using a Bobcat,
moving dirt and...
So I was covered with dust
in Simi Valley, California for about two days.
And three weeks later, I was attending
a computer class in Irvine, and all of a sudden
I was getting stabbing pains in my chest like
someone sticking a knife in with every breath I took.
>>>It's sort what we called the innate immune response
and that's a preprogrammed immune response and what
that preprogram means is it's not something
you've been vaccinated, it's not something
your body has ever even seen before but
it's the way your body deals with new exposures.
We've found that that's quite different for
different people and that's probably a product of what
historically entire ethnicities were exposed to.
>>> Today Jerry is in San Diego visiting Robin Smith.
Robin is also a Valley Fever survivor.
>>>I was in a coma for ten days,
not expected to survive.
The doctors of course didn't communicate that directly
but it was later told to us that my odds of survival
were one tenth of one percent.
>>> Cocci Meningitis nearly claimed his life
and took away the use of his legs.
Today, Robin is a coordinator of
disabilities for the San Diego Padres.
>>>I was so proud of... of, uh...
>>>Robin.
>>>Robin...
There's another thing that affected me is my brain,
there are a lot of dead spots in there
and I get a loss for words.
But I was applauding Robin on his ability and get past
it and get a job and be a productive citizen.
In my case, I lost so many brain cells,
the field I was in...
I was not able to go back to work.
I sat at that computer and...
It's gone.
It truly is gone.
>>>Before you meet someone or even before you read
stories online you know you think, this is...
"Why? Why me? Why am I suffering so much?"
And you read about other people's...
how it's affected them, and you go,
"Wow, I'm not that bad."
>>>And one of the things that I've found is...
that that can be such an isolating experience to
have a diagnosis like Valley Fever.
And like Jerry says, it's almost like, uh...
you're bobbing on the ocean.
You're that little speck in the middle of
a sea of blue that feels very, very isolated.
>>> Valley Fever survivors like Robin and Jerry and
many others around the world turn to a website and group
started by a Washington state survivor and her son.
It's a lifeline for people looking for answers
about the mysterious disease.
>>>99% of them have the disease
and the other 1% are husbands and wives or
mothers or daughters of people who have the disease.
And I encourage them to educate themselves.
When they go into a doctor's office,
they have to know more than the doctor about this disease.
Trust his overall medical experience and his medical
education but where this disease is concerned,
don't let him brush you off or her brush you off and tell
you to go home and call them if you get worse.
>>> Sharon Garrett and other survivors have turned
into advocates for Valley Fever Awareness.
Their concern: a lack of awareness in the medical
community leads to so many misdiagnoses.
>>>I'd like to see it mandatory for doctors
to have an official Valley Fever training.
Um- I'd like to see um- a protocol for symptoms
when they're presented to clinics
and hospitals and doctor's offices.
>>>It is surprising that with it being so common in this
part of the world that still, diagnosis gets missed,
often times for weeks, and people go through
a great deal of bad experience with pneumonia,
fatigue, fever, without having an answer.
>>> Attention and research funding given to Valley Fever
pales in comparison to other high profile diseases.
From 1999 to 2012, over a 13-year span,
there were about 37 thousand West Nile Virus cases.
But in one year alone, 2011, there were 22-thousand
reported cases of Valley Fever,
almost two-thirds as many.
Despite that, the National Institutes of Health Funding
for Valley Fever research is just four percent of West Nile.
>>>We see significant spikes in funding... grant funding,
with many of our emerging pathogens that we see.
We do not see that with Valley Fever at all.
>>>I think for anybody whose family or themselves are
afflicted with an uncommon illness and it doesn't look
like much is being done, it's natural to say,
"Hey what about us? Other conditions seemed to
have work done on them, why is this one not
getting the attention it deserves?"
I get that.
>>>I think any disease that affects part of the country
and that's been around for a long time has the
unfortunate fact that it may not get the
attention it needs and deserves.
>>>It's not that the companies won't do it
and won't be interested, but they all say,
"Show me the proof...
Show me a sick human who you have helped."
>>> David Larwood, the CEO of Valley Fever Solutions
says hope could be on the horizon:
researchers may be on the cusp of a cure.
A drug called Nikkomycin Z.
Experiments in the 1980s showed promise
but stopped when the pharmaceutical company
went out of business.
Larwood's company is trying to raise money
for human trials.
>>>But support for our effort has been very,
very limited so the several million dollars that
we need to simply make the drug has been a challenge.
And so we need a million dollars to make the
drug and then we need another couple of million dollars
to do the trials...
>>>You don't have it.
>>>We don't have it.
And we're looking in all sorts of places,
philanthropic, government;
>>> Because there is no cure,
patients who have survived Valley Fever
end up regularly taking anti-fungal medications
to prevent it from spreading again.
>>>I'd say it swelled like a watermelon
>>>The cocci fungus attacked Jack Miller's ankle in 2004.
>>>But I mean it was very large because as
it set up inside my ankle, it's just breeding
or it's multiplying or doing whatever it's doing,
but it's not going anywhere and it's staying right there.
>>> Jack didn't even live in the endemic Valley Fever
area when he caught the disease.
Turns out he breathed in the spores while simply
driving through the San Joaquin Valley.
>>>Yeah I would come down Monday night from Susanville,
go ahead and jump in my truck, go ahead and make my run.
Layover in San Diego, come back, make my run.
So just you know, window, halfway cracked or whatever,
you can't filter out a spore, you know.
If it was going to get up in the air and
find its way to my nose or nostrils you know.
>>> A decade after that fateful breath
in the cab of his truck, Jack now drives 1,700 miles
round trip from Idaho to UC Davis Medical Center
several times each year for treatment.
He'll take anti-fungal medication
for the rest of his life.
>>>I'm fortunate that my employer covers the cost of
my medicine uh- 'cause right now I think it's about
3,500-4,000 dollars a month, the medicine I'm on
to go ahead and just keep it squashed.
>> While thousands wait for a cure, Valley Fever
has continued to take a toll on the Central Valley.
In 2001, twenty-three Navy SEALs were training near
Coalinga, California, not far from that
model airplane competition.
Several started getting sick.
A Naval Medical Center study confirmed an outbreak.
Forty-five percent of the SEALs tested positive
for Valley Fever.
All it takes is one breath.
>>>My guess would be if you took the twenty years,
we would have been flying here,
this is just off the top of my head,
it's probably half a dozen people who may have
gotten it relatively seriously that required,
y'know, some form of serious medical attention.
Uh- there are one of two people who have been told
by their doctor never to come back.
>>> Competitors bringing their models
to Lost Hills are forewarned,
but what about people who don't have a choice?
[sound of cell door closing]
>>> Valley Fever is also running rampant here:
inside some of California's San Joaquin Valley prisons.
The disease has been blamed for the deaths of dozens
of prisoners and even prison staff.
The state spends about $23 million dollars a year
caring for prisoners with Valley Fever.
>>>Patients who are inmates who are- who have diabetes,
whose race is Filipinos and African Americans,
they have to be moved out of this area which has cocci.
Okay?
Also those patients who we categorized as high risk
will be moved out also.
>>> In World War Two, German prisoners were even
transferred out of this area to avoid violating the
Geneva Conventions governing prisoner treatment.
>>>Because the Nazis invoked the Geneva Convention,
that they were being exposed to this disease
as cruel and unusual punishment.
And so the Nazis were moved, Nazis!
>>> Despite their anger over the lack of awareness
and current treatment, some survivors
do see signs of hope.
>>> In late 2013 experts from across the U.S.
attended a symposium in Bakersfield
organized by congressman Kevin McCarthy...
alarmed by the recent spike in Valley Fever cases.
>>>I had an uncle, um... it went to his bones,
I have a mother-in-law who got it late,
just a couple years ago.
She was bed ridden for more than six months.
Even my own mother.
I remember being called back where she had an X-ray
in her lungs and the doctor called her back thinking
she had cancer and we all went down,
found out a day or two later no,
it was a scar from Valley Fever as a child here.
>>>When I got Valley Fever I got very week.
After I was feeling better I went to the doctor.
The little ball in my lungs is smaller now.
And now I stand grateful.
Thank you for your time.
[crowd applauding]
>>> Emily Gorospe was there... sharing her story.
Also there, the directors of the National Institutes of
Health and the Centers for Disease Control.
Promising a new research study.
>>>There are a lot of unanswered questions in
Valley Fever and that's a real concern.
That's why it's so gratifying and important that we
see such collaboration here within California
as well as with Arizona.
>>>My dream would be that if you
walk in the door with pneumonia,
or even just with fever for a couple of days,
you're not quite sure what it is,
that there's a simple, inexpensive test that will say,
"Okay, you got valley fever, you don't."
We don't have that right now.
>>>Until there's a medical breakthrough,
there's little that can be done
to eliminate this danger in the dust.
For its victims... its survivors...
and their loved ones... it's about waiting...
hoping... and warning others.
>>>I call this my really slow near death experience.
People- usually it happens in a flash
and mine is spread out over decades.
So yeah, I feel like it's stolen my life.
>>>It scares me to death. It really does.
>>>If you breathe, you're susceptible to Valley Fever,
is essentially what it comes down to.
♪♪
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This Viewfinder episode is supported by
UC Davis Health System.
At UC Davis, the lives we touch inspire us.
♪♪