There’s a lesser-known condition linked to Zika — but this one affects adults
As of August 10th, there have been nearly 2,000 cases of Zika virus infection reported in the continental US. Almost all of these cases were acquired overseas. But this summer, we saw the first cases of Zika to be transmitted within the US. This recent outbreak is stemming from a Florida neighborhood and among the six people infected on US soil, at least one is pregnant.
Most of us know to be concerned when we hear of a pregnant woman testing positive for Zika — the association between Zika virus and microcephaly in infants has been widely publicized.
But less attention has been given to a second debilitating condition with a putative link to Zika. This condition is Guillain-Barre Syndrome (GBS), named after the French neurologists Georges Guillain and Jean Alexandre Barre who first described it during WWI.
GBS is rare, affecting roughly one out of every 100,000 people. Even among the roughly 2,000 Zika cases in the U.S., only six cases of GBS have been reported.
Nonetheless, six out of 2,000 is roughly 300 times higher than the GBS prevalence among the general population.
The effects of GBS can be scary, including muscle weakness and paralysis. That’s because, in GBS, a person’s own immune system attacks the waxy coating surrounding neurons, preventing those neurons from functioning properly.
We spoke with Altino Williams, who knows from personal experience how debilitating GBS can be. He was diagnosed with it when he was 32. At the time, he was living in Cape Town, South Africa.
“I couldn’t get an immediate diagnosis at the local hospital purely because GBS was so rare,” he said. “It took the neurologist days to diagnose my condition, and eventually confirmed it with a lumbar puncture.”
“Within two hours, it spread to my knees. The numbness continued until it spread throughout my entire body.”
Before this point, Altino had never heard of GBS. He often spent time outdoors with his wife, son, and two daughters. He worked as a truck driver in Cape Town, and he was able to provide for his family until GBS derailed his daily life.
With GBS, symptoms often first appear in the lower body. This was the case for Altino. “I felt incredibly numb in my toes at first. Then, within two hours it spread to my knees. The numbness continued until it spread throughout my entire body. I eventually became paralyzed.”
As the symptoms progressed, Altino and his family became very nervous. When GBS spreads to muscles beyond the legs, basic bodily functions like breathing, blood pressure and heart rate can become affected. At this point, the condition is life-threatening.
“When I came home, I had to spend three more months on a respiratory machine.”
“I thought I was going to die because the paralysis was so severe that I was experiencing respiratory failure. My family prepared for the worst because not everyone that we heard of had made it out alive.”
Day after day, Altino remained in the intensive care unit, breathing off of a respiratory machine. “I was admitted for a total of 36 days. When I came home, I had to spend three more months on a respiratory machine.”
Everything in Altino’s life changed when he had GBS. “I could no longer do the things I used to. I couldn’t breathe on my own, talk, chew, swallow or even smile. My family had to help me do the things that I used to do for myself, and to be honest it was really frustrating to be disabled.”
To help him readjust, Altino underwent three months of physiotherapy and occupational therapy at Western Cape Rehab Centre (WCRC).
“GBS made me realize that life is really precious. I started seeing other people with disabilities in a different light, especially those who really struggle with not being able to do anything on their own. I learned that I was so lucky to be alive because I was in a really bad state when I had GBS.”
The long-term effects of GBS vary dramatically from person to person. While the worst effects usually occur days to weeks after onset of symptoms, the recovery process often takes months. In most cases GBS is temporary and symptoms resolve, though roughly 30% of GBS sufferers continue to experience some weakness three years after their diagnosis.
For Altino, it’s been two years since his initial diagnosis and he must still use a wheelchair for many of his day-to-day activities. “I can walk a little bit at a time, and I’m able to drive a vehicle, but there are still tasks that are difficult for me to do on my own. I feel fortunate because I have reached out on social media and discovered there are people who are still confined to a bed after years of fighting GBS.”
To those with loved ones currently fighting GBS, Altino says, “Be there for your family or friend. They will need all your support and love. Be patient with them and mostly, be positive. GBS can be beaten.”
Why people infected with Zika are at higher risk for GBS is still unclear. The CDC is working with state and local health departments to track Zika-related GBS cases and identify any possible clusters.
By Ashley Spencer, Writer’s Ink
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