The impact of West Nile Virus on survivors

Since 1999, when most people in North America first heard about West Nile Virus, we’ve been measuring the impact of West Nile by looking at its fatality count. It’s time to take note of the impact on the survivors of West Nile meningitis and encephalitis.

As of August 2012, an outbreak of 1,590 cases of West Nile virus in 2012 was confirmed by the CDC. This is the highest number of reported West Nile virus cases since the virus was first detected in the U.S. in 1999.  Of these, more than half (889) developed neuroinvasive disease (involvement of the brain and nervous system), the most severe form of WNV infection.  That represents 889 people whose lives have been changed, forever.

As an advocate for people affected by encephalitis and related diseases, I have had the opportunity to see the horrible impact of West Nile Virus. For example, here’s one parent in Menifee, CA:

Lauren was 13 yrs old when she became sick. She was complaining of a headache and within hours her speech slurred and she had left sided weakness. It took a week for the diagnosis of E to come back, and then another 2 weeks for positive on West Nile. It has been almost 9 months and she still can’t talk, swallow or walk. She is like a newborn baby. Can’t even hold her own head up. Her neurologist pretty much says she won’t get much better from here on.

And this, from a Chicago woman:

Seeing my mom make slight improvement like being able to hold her two hands together is major triumph, people just don’t get what this bug can do. (The mother is still partially paralyzed after nine months.)  

It’s important to remember that approximately 80% of people who are infected with WNV will not show any symptoms at all. Only 20% of people who become infected will display symptoms, which can include fever, headache, and body aches.  Roughly one in 150 people infected with WNV will develop severe illness.

The key to raising awareness is to share information widely.  We must:

  • focus on reducing the mosquito population, and
  • acknowledge the serious impact of mosquito borne encephalitis such as West Nile and share information and support with survivors and families.

Like a seatbelt in a car, these are not precautions to be taken with loud and dramatic panic. But we can take these important public safety steps through education, self-respect and motivation, to protect our loved ones and ourselves.

Wendy Station is an encephalitis survivor and the founder and President of Encephalitis Global Inc., a nonprofit advocacy organization for encephalitis survivors and caregivers.

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  • Libby Headley

    I had WNV in 2008 and was hospitalized twice before I was diagnosed. I missed a whole month of work. I was profoundly weak, couldn’t lift my arms over my head. Had a terrible headache, neck pain and stiffness, high fevers and was just plain sick. I had only a mild case of meningitis with mine but it was bad enough. I had significant lymphadenopathy to the point that there was concern for lymphoma. I cannot say enough about how terrible this was and I am grateful to have survived!

    • http://www.facebook.com/KempMary Mary Hanratty Kemp

      So glad I found your post. My symptoms were the same. I got no medical care and had to demand a test after arguing with my doctor for it. Six weeks later I still have neck pain. I was bed ridden on month but my doctor says there was no need to test since there is no cure. I was not hospitalized despite the fact that I was too weak to sit up in her office and had to lay down the entire time. Her response was to give me IV fluids. What causes the neck ache?