The Orphan Disease/valley fever

[Guest guest]

The Orphan Disease

A cure for valley fever is a non-profit proposition

Biggs

Republic

http://www.azcentral.com/arizonarepublic/opinions/articles/0102biggsv

alleyfever.html

columnist

Jan. 2, 2007 12:00 AM

Arizona Republic - Phoenix,AZ

You would think that someone who has lived in the Valley of the Sun

since 1959 would have contracted valley fever decades ago and

developed immunity.

You'd be wrong.

Last fall, after visiting a doctor several times for symptoms that

kept changing but kept making me miserable, I was diagnosed with

coccidioidomycosis - the real name for valley fever.

The disease is caused by inhaling a coccidioides immitis fungal

spore, which inside the lungs grows and multiplies and generally

wreaks havoc on the body.

The good news is it's not contagious. The bad news is it is often

misdiagnosed and can, in some cases, be fatal.

By the time my doctor figured it out, the fungus had caused painful,

lumpy swelling in my ankles. I'm on medication for at least six

months - medication that will not cure the valley fever. Our bodies

have to fight off the fungus on their own; the anti-fungal

medication only helps stanch the spread of the disease.

The only reason I'm sharing this personal medical information is

that I've realized how little most people know about the disease,

even though we live in an area where the fungus thrives in the soil.

In my non-medical opinion, it's not only a weird disease, but also a

surprisingly misunderstood disease by people who live here.

So I was glad to hear that Congress passed a bill recently that

includes $40 million toward research on a vaccine against valley

fever. Our Arizona delegates need to advocate for stronger federal

support in fighting this disease. Our state legislators also need to

do more to ensure the health of their residents.

Beyond that, we need to better educate the people living in Arizona.

Dr. Galgiani, director of the Valley Fever Center for

Excellence in Tucson, calls it an " orphan disease " because

nationally there are too few cases to make it profitable for

pharmaceutical companies to develop better drugs. But half of all

the infections occur in Maricopa County, so perhaps we should adopt

the orphan and manage it better.

Or at least understand it. Most people think, as I did, that if

you've lived here for more than a few years you've already inhaled

the fungal spore and fought it off without even knowing it. They

think they are safe.

And who would know to link such disparate symptoms as a cough,

swollen ankles and a skin rash to that day spent digging up dirt a

couple months earlier?

Most doctors don't necessarily think of valley fever when presented

with a patient who's feeling ill. Early symptoms include fatigue,

low-grade fever, cough, chest pain, muscle and joint aches, loss of

appetite and night sweats. Some people develop a skin rash.

According to the Galgiani, about two-thirds of those who contract

the disease have only mild symptoms and don't even visit a doctor.

He estimates that the 5,000 diagnosed cases from 2006 represent

about 50,000 cases where people visited doctors but were not

properly diagnosed.

Those are pretty bad odds.

There's no consensus on treatment, either. Some doctors treat

everyone; others hold off, figuring the patient will get better

without medication.

But those who don't fight it off early face possible organ damage

and spinal meningitis, which can be deadly.

" The problem is there are no clinical studies to tell us what to

do, " Galgiani said. " It's not that there's bad data; there's no

data. It's embarrassing. "

He's working to change that, but of course funding is the key.

I've learned a lot about valley fever in the past few months. I

still think it's a weird disease. And it's ours. We need to get

serious about fighting it.

Reach the writer at patricia.biggs@... or (602) 444-

7961.