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by Grace R.

In July 2022, an unvaccinated 20 year old in Rockland County, NY was diagnosed with paralytic polio, a disease that’s almost eradicated. Many ask “how did this happen?” To polio survivors like me, it was only a matter of ‘when’ not ‘if.’ With misinformation regarding healthcare and vaccines skyrocketing. 

In 2020, millions of people hoped a vaccine would quell the pandemic, while thousands of others from politicians, physicians and the general public shared misinformation regarding them. These people forgot the many survivors of past vaccine-preventable diseases and the dangers viruses pose to their long-term health. As someone who survived one vaccine-preventable disease, why would I risk another? 

I’m 30 years old and contracted polio in 1992 in India. Shortly after, I was adopted and raised in Saint Louis, MO by a phenomenal and supportive family. Despite having great insurance and access to world class medical care, polio is not an easy ride. 1 in 200 polio infections are paralytic, and mine was one of them. 

Surprisingly the paralysis and leg brace are the least annoying side effects. The long-term neurological consequences of post polio are arguably worse. Post polio is the further weakening of muscles that may or may not have been affected during the initial polio infection and occurs 15-40 years later in 25% – 40% of polio survivors. If someone has paralytic polio, they are more likely to be affected with post polio.

So what are the silent side effects of a disease long forgotten? Personally, the constant cold feeling is truly the worst. Poliovirus affects the hypothalamus, complicating the ability to regulate body temperature. Ask any polio survivor and we will tell you that we are always cold and our feet are bluish-purple. We perceive the air temperature to be ~20 degrees cooler, so a 70 degree room will feel like it is 50 degrees. You can always find me with a jacket on or under three blankets. 

Chronic fatigue is another hurdle in our lives. I describe polio as living at 20% battery and being easily overexerted. Muscles unaffected by polio are strained, causing our bodies to further become exhausted. Its effect on nerve functioning can also have downstream effects. The weirdest side effect of polio I have experienced? Recurrent urinary and kidney infections, which took two years and multiple antibiotics to resolve. 

In 2005, I began my advocacy work with Shriners Hospital with a goal of preventing another child from contracting polio. Since then I have spoken to groups such as Rotary, the Saint Louis Cardinals, NFL and college football teams, and (my personal favorite speaking gig) the Trans-Siberian Orchestra concert in Saint Louis! 

What is the most effective way to get a family to vaccinate their child? Explain to them in person the nuances and oddities of polio. Many families do not realize polio affects every body system, not just lungs or a paralyzed leg. Families do not realize the day to day reality of disability or the logistics and planning involved to keep functioning in a world not made for disabilities.

Misinformation is why a 20 year old was diagnosed with polio in 2022. Misinformation is why hundreds of thousands unnecessarily died of covid instead of being vaccinated. Misinformation will continue to disable and kill people as long as it remains unchecked. 

When celebrities advocate against vaccines, physicians retweet for attention, and pastors hold church during the height of a pandemic, a human life may pay the price. Polio, along with other vaccine-preventable diseases, will remain prevalent and history may repeat itself.

Grace R. is a polio survivor and vaccine advocate from Illinois. Her story, like all others on this blog, was a voluntary submission. If you want to help make a difference, submit your own post by emailing Noah at [email protected]. We depend on real people like you sharing experience to protect others from misinformation.

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