West Nile virus can cause severe, life-threatening complications, and a Hoyt woman who is struggling to return to some semblance of normal two years after contracting the disease hopes to get that message out to more people.
Susan White was officially diagnosed with West Nile virus in 2016, but the 62-year-old said she apparently first contracted it in September 2015 when she ended up in an area hospital with symptoms that weren’t specific enough to bring about the correct diagnosis.
At that time, medical professionals didn’t always consider West Nile when making a diagnosis, and White said she’s convinced both the medical community and the general public still don’t always tune in to the severe side of the virus.
White and her husband, Paul White, each contracted the severe form of West Nile — called neuroinvasive disease — in the past two years. Paul White had significant health challenges, but they lasted a shorter period of time and he recovered more easily than his wife.
“I was paralyzed. My stomach was paralyzed, my intestines were paralyzed,” she said, adding that the paralysis, listed by the Centers for Disease Control as one of multiple potential severe symptoms, impacted her entire body. White is just grateful that it didn’t affect her diaphragm, which impacts breathing and is one of the reasons some people die when they are affected by neuroinvasive West Nile.
“Until it hits you, you really don’t understand,” White said.
She’s still going to physical therapy and is considered disabled. Her husband is back at work and doing well, she said. His severe symptoms showed up as an all-over body rash and then, when he was on a business trip, such severe confusion that he didn’t know where he was or what he was doing there. Paul White ended up in a Chicago hospital, where he was diagnosed with West Nile virus.
White said in her in-depth studies of West Nile and associated research, it seems that those who suffer with paralysis have the most lingering affects from the disease.
Her journey hasn’t been as easy as her husband’s. For more than a year, she lost control of many muscle functions, unable even to button her clothes.
“For the first year, I actually felt better because everything was numb,” White said. “Then I couldn’t screw in a light bulb; I couldn’t lift my arms. Finally they sent me to an MS (multiple sclerosis) spinal cord therapist.”
That treatment has helped White to understand what she’s going through, and she’s doing therapy to rebuild her muscles. Although she jokes about losing so much body mass and being “scrawny,” White carefully backs away from any photographs.
Still, she’s grateful every day to still be in the fight.
“If you give up, you die,” she said. “”Every day’s a gift to me.”
Along with getting well, White fights to get people to understand that West Nile virus can be serious. That’s also the goal of the Shawnee County Health Department, which released information on Wednesday that the number of West Nile virus cases is up by one this year with weeks still left in the mosquito season.
Four cases of West Nile virus have been reported in Shawnee County in 2017, and at least one of the cases resulted in severe disease. According to the CDC, Kansas has reported 14 West Nile virus cases through October, with five of those severe disease.
Although 2017 shows Shawnee County up by just one West Nile virus case, Craig Barnes, spokesman for the Shawnee County Health Department, said the agency wanted to use the opportunity to remind people to be careful.
“When we see an increase, that’s when we’ll make sure we get out that public notice to the community so they can start taking steps as much as they possibly can to prevent the spread of that disease and the contraction of that disease,” he said.
Most people who contract West Nile virus, or about eight out of 10, have no symptoms, but severe disease occurs in one in 150 cases, according to the Centers for Disease Control.
Symptoms of neuroinvasive illness include high fever, headache, neck stiffness, stupor, disorientation, coma, tremors, convulsions, muscle weakness, vision loss, numbness and paralysis, the CDC said. About one in 10 of those who develop severe illness die.
White has to refrain from stopping people working outside to tell them to cover up and use appropriate bug sprays, those that are approved by the Environmental Protection Agency and contain Deet-type chemicals.
“I wear shirts all the time, and people will come up and ask me about it,” she said. “I tell them just be careful. Don’t go out at dawn and dusk. Spray yourself. I protect myself now, even though I’m supposed to be immune.”
To prevent mosquito bites, the health agency recommends:
- Use an Environmental Protection Agency (EPA) approved insect repellent
- Wear long-sleeved shirts and long pants
- Stay inside
- Limit your time outside at dawn and dusk when mosquitoes are most active
- The agency also encourages people to dump any standing water around their property, as those create mosquito breeding grounds.