Last month, we reported about a sudden outbreak of acute flaccid myelitis (AFM) in 2018, a rare condition that has Polio-like symptoms, and affects mostly children.
Sometimes, stories like this can cover the disease spread but miss the human element. While there have been no deaths reported thus far, and 90 cases have been confirmed (a relatively low number), we want to recognize the real, human toll a rare disease takes.
In that spirit, a local Minneapolis, Minnesota news outlet just featured a caregiver mother, Elaine Young, who is fighting to find help for her young son Orville, who is one of the 90 confirmed cases of AFM.
What is Acute Flaccid Myelitis?
Acute flaccid myelitis is a rare condition that affects the nervous system; specifically the area of the spinal cord called gray matter, which causes the muscles and reflexes in the body to become weak.
Most people affected with AFM will have sudden onset of arm or leg weakness and loss of muscle tone and reflexes. Other symptoms include:
- facial droop/weakness,
- difficulty moving the eyes,
- drooping eyelids, or
- difficulty with swallowing or slurred speech
A Mother’s Fight
Elaine recalled that, like many other cases of AFM, Orville’s symptoms first appeared to be nothing more than a common cold.
“You know, just a mild cough and a runny nose,” she said. “In July, around the Fourth of July, we were all sick — the whole neighborhood was sick.”
But after about a week, things took a serious turn when Orville developed a fever and his arm suddenly went limp. She took him to doctors and hospitals, and like many rare diseases, it took some effort to get to the bottom of what was going on.
“First they wanted to send us home and told me to come back if it got worse, and they expected maybe he was just in pain and didn’t want to move it,” she recalled. “But he had no pain, and he just could not move his arm.”
After finally getting that AFM diagnosis, Orville and Elaine’s lives changed, as Elaine made it her priority to fight for her son’s health.
“I like to joke that I have a 9-to-5 job just making phone calls at this point.” Elaine said. “[And] it’s just hours and hours of driving everywhere, and finding the time and a schedule — and they don’t have a lot of openings, so finding a schedule that’s even consistent is hard.”
Orville was able to regain function back in his legs after physical therapy, but one of his arms remains paralyzed, which as Elaine explains, complicates health insurance matters quite oddly.
“They have a list of what qualifies as a disability — and under neuromuscular disorders, it says if you have hemiplegia or paralysis of one limb, it has to impact more than one,” she said. “So his arm being paralyzed, he would also need to have trouble standing in order to qualify as having a disability. He has no disability, according to the government.”
As we all know, the work of fighting and caregiving for a rare illness is never done. And so Elaine carries on the fight. The Young family is participating in studies being conducted across the country to find the cause of AFM, in the hopes of preventing another outbreak.