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What I Want People to Know About Acute Flaccid Myelitis

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In 2009, just about a year before my life changed forever, my family and I visited Warm Springs, GA. We visited President Franklin Delano Roosevelt’s (FDR) Little White House and pool there and learned about his life with polio. I was only 7 years old, but I was very interested. My 11-year-old brother and I explored and took tons of pictures, and we dipped our fingers in the warm springs’ water. We even walked down the ramp that led to the empty swimming pool and got in, listening to the tour guide share stories of FDR swimming with families and doing water therapy there.

On our way out, I spotted a man with crutches. We overheard him telling a family that he too had polio. I was shocked and immediately interested in him and his story, but little did I know that only a year later, I would have my own story to tell.

On April 19, 2010, I was in ballet class when I got a severe headache. I was going to head home when my arms and hands fell limp at my sides, paralyzed. I walked to the car with my mom to go to an urgent care center, but when we arrived 10 minutes later, I couldn’t walk (even though my legs still moved). I was flown to the nearest hospital by helicopter, and I remained in the ER for six hours without receiving any treatment. The doctor sent me home. The next morning, I woke up unable to move my legs, a quadriplegic.

I was diagnosed with transverse myelitis (TM), a rare neuro-immunological disorder that damages the spinal cord. I received IV steroids, which didn’t seem to do anything, so the doctors decided to give me five rounds of plasmapheresis. After I had the plasma exchange, my big toe moved and it seemed like the treatment was helping my legs. I stayed in the hospital for two months, where I regained the ability to walk and partial use of my arms and right hand in therapy. My left hand doesn’t work at all, and my arms and shoulders don’t move very well.

But as I lived with this disorder for years, my parents and I always thought my presentation of transverse myelitis didn’t match up with the other patients we knew. We’d met several TM patients at therapy and camps for people with TM. Mom and I used to always say that I have a rare disorder, but I’m rare within that rare disorder. We’d basically determined I most likely did not have TM, but that was my diagnosis on paper, so we just said I did.

In 2012, cases of what doctors termed a “mysterious polio-like illness” and later called acute flaccid myelitis (AFM) came up in California, and the presentation looked exactly like me. A doctor I’d seen in 2010 only six months after my onset even commented that my presentation and the results of my nerve tests looked like polio, but he said I didn’t have polio. After doing tons of research and listening to podcasts about AFM done by AFM expert Dr. Greenberg, Mom and I were sure I had AFM and not TM, and he confirmed our suspicions in 2018.

When I became paralyzed from the neck down in 2010, I was diagnosed with transverse myelitis because acute flaccid myelitis was not known. But there had been clear differences between my case and most TM cases. Only my anterior spinal cord was affected (rather than both the anterior and posterior, i.e. typical TM), which explains why I only lost sensation for around 24 hours (sensation is on the posterior cord, so the inflammation from my anterior cord seeped through to the posterior temporarily). My paralysis is also flaccid rather than spastic, as my arms dangle and flop around instead of tightening up. I was also a quadriplegic and had an odd recovery pattern (regaining leg movement but not arm movement), and most TM patients I was surrounded by were in wheelchairs.

AFM is a subset of TM, meaning the disorders are related. While both disorders are very similar, they are also very different. AFM is not an autoimmune disorder and occurs when a virus that is not polio but similar to polio (researchers think one such virus may be enterovirus D68, i.e. a cold or respiratory virus or the virus that causes hand, foot and mouth disease) attacks the spinal cord while TM is an autoimmune disorder that occurs when the body attacks the spinal cord. AFM results in paralysis that is flaccid rather than the spastic paralysis caused by TM. The grey matter and anterior horn cells are damaged as a result of AFM, while the myelin sheath is damaged as a result of TM. It also seems that AFM results in either neck-down paralysis or paralysis of one limb while TM generally results in chest or hips-down paralysis.

The pattern AFM takes on is almost identical to the pattern polio took on years ago, but AFM is not the same as polio. AFM appears in the news frequently when “spikes” of it occur seemingly to be every two years in the fall (because illnesses go around that time of year). But much of the information given in the news reports is watered down. AFM is not as rare as it seems to be, but a full recovery is rare. Recovery patterns differ with each case. And washing your hands will not prevent you from getting AFM; it could prevent you from getting sick, but that is not guaranteed. If you get a cold, that does not mean you’re going to get AFM, however. There are also common misconceptions that vaccines cause AFM, or on the flipside that not getting vaccinated causes AFM. Neither of these things is true! An autoimmune reaction to a vaccine may cause TM, but not AFM. AFM is caused by a direct viral attack on the spinal cord and not a vaccine. There is no vaccine out there at the moment to prevent AFM however, and there won’t be until researchers discover for sure exactly which viruses cause AFM.

Many people think AFM did not exist before 2014 due to the “spike” of cases in Colorado; however this is not the case. I got AFM in 2010 — four years before then. I just wasn’t diagnosed with AFM because doctors did not know what it was yet.
With AFM being in the news lately, many people are trying to understand what it is and what causes it. My hope with sharing my story is that people have a better understanding of how AFM happens, what it is, and the misleading facts many media outlets are sharing. The CDC numbers are grossly understated because they are not counting cases of AFM from before 2014, and this needs to change so AFM can receive the proper funding and research it deserves. Children are losing the ability to breathe, eat, talk and move, and the peacefully sleeping child representing AFM on the CDC home page is not an accurate representation of this disorder.

Originally published: October 28, 2018
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