Sharon's Desk  

From time to time I will write commentaries on various issues with Valley Fever.  They are not meant to offend or scare anyone, but rather to ensure the facts are fully disclosed and not whitewashed.  Whitewashed, misleading and misrepresented information is the only way so many residents have even heard of Valley Fever.  I feel it is important to set the record straight.  The wonderful people of Arizona and the other endemic areas have heard misrepresentations about VF for a century.  Few outsiders to these areas have ever heard of VF at all.  Everyone deserves to hear the whole truth.

June 2009

I agreed so much with Dave's recent commentary on a CDC report that I decided to include his comments as an entry here:

You may have read the recent CDC report or the newspaper articles based on this report. The original text is linked below.
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5805a1.htm

Why is this important?  Because someone interested in public health should remind people that anyone at any age can contract this disease and suffer from it.  In fact, their own data showed that a younger group had suffered more overall!  The CDC's apparent focus is on risk groups, which has the unfortunate effect of implying safety to readers who are outside the group.  "Only people of a certain age or race are at high risk," the uninitiated might say from looking at this data, "so I guess it's perfectly safe for me!" 

Unfortunately, this report (and so many others) are seemingly written to create this attitude among people unfamiliar with the importance of this disease, journalists included. This actually detracts from public health rather than promoting it. The whole truth, plainly saying other age groups had more infections overall, would be far more beneficial for doctors, reporters who present this to the public, and the public itself. 

"By race/ethnicity, hospitalizations were highest among non-Hispanic blacks, compared with non-Hispanic whites, Hispanics, and Asians/Pacific Islanders."

The African-American hospitalization rate nearly doubled to 169 people, and the Caucasian hospitalization rate nearly doubled to 570. Although the case rate per population of each group still shows race-specific risks, and cases are notoriously under-reported, it remains important to mention that EVERYONE is at risk.

Anyone who heard the CDC report's comments without scrutinizing the numbers would believe Caucasians were at a lower risk. In reality, the included numbers showed more Caucasians were infected than any other group.  By ignoring this fact and also mentioning the increased health risk to immunocompromised people (who are at a greater risk for the worst symptoms of ANY disease), this selective use of the data even affected the CDC's recommendations: 

"Because intensive dust exposure appears to increase the risk for infection, CDC recommends that persons living or traveling in regions where coccidioidomycosis is endemic who are at risk for severe or disseminated disease (e.g., older persons, pregnant women, immunocompromised persons, and persons of black race or Filipino ancestry) should avoid exposure to outdoor dust as much as possible." 

Since overall infection and hospitalization data indicates that previously healthy Caucasians are those who suffer the most, the CDC's proclamation disregards the risk to the people who experience Valley Fever most often. 

This is not helpful.  For a center that is supposed to be focused on helping disease control and prevention, their report doesn't appear to be written with the intent to help either. Valley Fever Survivor is working tirelessly to deliver accurate and up-to-date information to people in a way that makes the risks clear. We hope in the future, as our work continues, that the CDC and other health organizations will join us by reporting the information clearly and without whitewashing the severity of the disease.

March 2008

It has been a long time since I wrote my first commentary for my desk. It is a new year, but unfortunately, it is estimated that about 400,000 new cases of Valley Fever were contracted in 2007. 2008 is not starting off well either.

The Vaccine Project of the Americas still has not received any funding that was earmarked for them. In January of this year we alerted hundreds of thousands of our readers about the importance of sending out their own personal letters to insure $10 million to fund the vaccine project for 2009. We heard from our congressman's email update that it did not pass this year. It is unfortunate and tragic that so many people will suffer as a result.

In September of 2007 VFS with the directors of the Phoenix/Glendale Support Group, held a benefit for Dr. Garry Cole in Glendale, Arizona to support his vitally important Valley Fever vaccine research.

You can still help with Dr. Cole's VF vaccine research by using the information on our Links Page and then sending in your check to help keep his important work going.

To date, we aren't much further along in the hopes of saving lives and stopping this illness from affecting the health and lives of endemic area citizens and their tourists. Nothing has changed with the politics of Arizona when it comes to warnings. They still keep this a "local secret" and probably fear the day the horrors and reality of their biohazard and the incurable disease it causes is brought before the American people and travelers from abroad.

As a result of the large number of people who attended the super bowl in Phoenix this year, there will undoubtedly be Valley Fever cases occurring around the nation. One can only wonder just how many unsuspecting adults, children and pets will suffer severe consequences because they did not know about Arizona's naturally occurring agent of bioterrorism. Just how many were sick right away, and how many will be asymptomatic for a while until it activates months or years later can only be speculation.

Our country's citizens deserve to know the truth about what can befall them if they pass through, vacation in or move to endemic areas of the USA. After all, Valley Fever is the most virulent fungal parasite known to man, federally regulated by two anti-terrorism laws, is incurable and can be devastating and deadly. All it takes is inhaling one spore to contract a fatal case of Valley Fever.

Please help us spread the word about the disease so that future unsuspecting tourists, retirees, students and business travelers will have the right to learn the facts. For much too long the combination of misleading, whitewashed, semi-accurate and blatantly wrong information has caused pain, anguish, long term suffering and death. Primarily, this is because virtually no one knows the consequences of vacationing, passing through or living in these endemic zones. With 65% of all Valley Fever cases being contracted in Arizona it's plain to see why warnings need to be instituted. To date there have not been warnings of any kind over the airways to alert tourists, convention goers, students, retirees, etc. It is very sad that their states' appear to care more about their economies than your health.

Please join us in action so that we can finally make sure that the vaccine and cure projects are fully funded. This disease needs to be eradicated once and for all.

We are very proud that Valley Fever Survivor has become the hub of the worldwide Valley Fever community and is the only web site with the most up-to-date and accurate information available anywhere. It is our goal to help people learn the facts and information about this incurable disease caused by the Southwest's naturally occurring biohazard.

June 2007

In 2008 the Super Bowl will be held in Arizona.  People are already renting homes for a weeks’ stay for $10,000.  They have never been told that their stay could just be the thing that will cause them to lose their health or their very life.  If someone told them that the house they were about to rent was filled with radioactive substances, poisonous gas, or other health hazards on the property, I doubt if anyone would stay there.  Cocci spores can be indoors on objects, outdoors on furniture, or coming in through window screens, ventilation systems, etc.  Of course it could also be living in the ground surrounding the home where they plan to stay.

"Fomite transmission" is what happens when spores are inhaled after they have come to rest on an object, which could carry the spores anywhere it travels.  This is common and all it takes is inhalation of one spore to contract a serious infection of Valley Fever.  People need to know the facts in order to determine what health risks they are willing to take.

Valley Fever infects more healthy people than immunocompromised people, despite implications to the contrary.  It is an equal opportunity parasitic fungus.  Anyone can inhale this "monster."  It is approximately the same size as an anthrax spore and is not visible to the naked eye.  In fact over 15 trillion spores could fit in one cubic inch.

Please thoroughly read our facts page, faq page, misconceptions page, symptoms page, action letters page and our archive page for the most up-to-date and accurate information available on this disease.  Coccidioides sp. is so serious that it is regulated as a Select Agent of bioterrorism in two federal antiterrorism laws.  Be informed before you make your decision to enter the desert southwest.  If you still decide to go there, at least you will know what to expect if you fall ill and contract Valley Fever. Knowledge is power and only you can decide if you are willing to risk your health and accept the consequences of your actions.  Remember, Valley Fever is incurable and can be debilitating, extremely painful, chronic and deadly.  Having this agent of bioterrorism inside you is like nothing else you have ever experienced.  I hope you never do.

If you still think that Valley Fever is a benign disease of no consequence after you have read all the information on this web site, then nothing we can show you will change your mind.  However, for those that want the truth no matter how despicable it is, then you are the ones that can gain from our years of in-depth medical research.  Until Valley Fever Survivor's work began, the experts' knowledge was rarely heard by the general public.  There wasn't a voice for all those that have died or are presently debilitated due to Valley Fever.

It is vitally important that people are made aware of the serious epidemic that has been occurring for years. The endemic states’ politicians have known Valley Fever would infect university students, business travelers, retirees, infants and children, mothers and fathers, sisters and brothers.  Without warnings, unsuspecting people and their beloved pets have been forced to endure a horrible incurable disease.  This disease has destroyed families; people have lost their homes, businesses, spouses, health insurance, and much more just because they inhaled a Coccidioides sp. spore and contracted Valley Fever.

I do not want to see anyone else infected unnecessarily just because the facts about Valley Fever were whitewashed or obscured.  Too many people have been misled to believe a serious VF infection would not happen to them.  Nothing could be further from the truth.

Just how bad can Valley Fever be?

It can enter into your eyes, causing blindness and possible removal of an infected eye. It can attack any organ or limb in the body to cause lesions, pain, and to require amputations. Some cases can lead to the necessary surgical removal of an infected lung, or the disease could mimic lung cancer and lead to surgical removals that otherwise would not have been necessary. Valley Fever can cause facial lesions that leave permanent scaring and/or disfigurement.  In the most lethal variety of the disease it can attack the lining of the brain.  It can infect the bones and joints, causing chronic debilitation, pain and removal of the infected part.

Too many people with Valley Fever have become wheelchair bound as a result of having too many spinal taps.  Too many people need shunts to be surgically implanted into their skull to receive amphotericin B injections to kill cocci in their cerebrospinal fluid.  The antifungals given can have terrible side effects and work in less than 70% of cases.  These antifungal drugs are not cures since they only bring the population of cocci down in hopes one’s immune system can take over and cause these rapidly multiplying parasites to go dormant in your body.

Valley Fever can cause dangerous inflammation and lesions in virtually any part of the human body.  In men it can infect the prostate and testicles, causing removal of the infected organ.  How many of the men reading this would take the chance of visiting a place where that outcome is a real possibility?  If a young woman of child bearing age has to remain on lifelong antifungal drugs to keep the disease at bay, she may be told she can never become a mother.  Is that fair to do to a child or young woman?  Only you can decide what risks you are willing to take with your health, but you need to know all the facts in order to make your decision.

Unsuspecting tourists, university students, retirees and businesses are lured to the sunbelt without any knowledge that this severe disease even exists.  The ongoing epidemic has been kept a "local secret" for decades.  It is estimated that over 400,000 people have contracted VF in 2006.

To date, Arizona has refused to take responsibility for this disease or compensate the residents or visitors that suffer from it.  The politicians and health officials clearly don't care enough about their visitors' lives to issue warnings, and they continue to give half-truths about VF to their residents.  Do you want to live in or visit a place that does this?

In the May 2006 KING-5 Seattle news story on Valley Fever, the on-air reporter mistakenly said I fear my Valley Fever may come back.  Actually, I have no fear of Valley Fever returning since it never left.  Even though its worst symptoms are in remission, I live with the chronic pains and problems from the disease every day.

When I detailed the horrors of contracting VF and explained that new symptoms can activate or old ones can reactivate, it may be misinterpreted as a fear. I simply feel it is knowledge that everyone needs to know.  Only with detailed and accurate information can people make their own decisions on where they visit and live when it involves a serious health risk.  It is especially important when one knows that a state like Arizona will "hang you out to dry" and do nothing to help you once you are infected.

When our book comes out it will send shockwaves across our nation and abroad. We at Valley Fever Survivor are in a fight to get warnings out to the public as well as funding for the vaccine and a cure for those who presently suffer with it.  Please join us and become proactive.  We only wish you the best of health.