Wednesday , May 12 2021

AFM: After the disease paralyzed her son, Mom turned to polio survivors for a response

It was 2012, and her 1 year old son, Lucian, suddenly became paralyzed from the waist down. While receiving excellent medical care from her doctors in California, she and her husband longed for emotional support and guidance that could only come from the parents of a child like Lucian.

But that was the problem. Lucian was one of the first children in the United States to diagnose a paralyzing disease called acute flaccid myelitis, or AFM.

Even on Facebook, his mother could not find allied souls.

Then, one day, the task of a random class gave Oliver a solution that proves that history is sometimes repeated.

Olivera was in her final semester at a medical school, and she was assigned to visit a support group that had significance for her life. She chose a support group for polio survivors because her son and polio disease are similar.

Members of that support group – elderly people who have suffered a long-standing eradication in the United States – will change their lives forever.

AFM and polio: scary similarities

In the late 1940s and early 1950s, polio married more than 35,000 people per year on average, making it one of the most terrible diseases of the 20th century, according to US Centers for Disease Control and Prevention.

Polio and AFM are very similar in ways: Experts believe that both are caused by the same family of viruses. Patients, mainly children, begin with what looks like a cold or flu, then a paralysis of strikes.

Young survivors of rare polio-like diseases are now progressing
Since 2014, there have been 440 cases of AFM in the United States in 46 countries, according to the CDC. The average age of patients this year is 5 years.
Thanks to the polio vaccine, the US has been free from polio since 1979, according to the CDC.

But there is no cure or vaccine for AFM, and healthcare professionals need to understand the best ways to care for these children.

Some have fallen into the polio era to help their patients. Melissa Murray, a physiotherapist in Oregon, drew old medical articles for polio to find out what kind of exercises she would give to her patient, Bailey Shihan, who was diagnosed with AFM in 2014 at the age of 7. Her whole right side was paralyzed.

"I was confident and a bit nervous, because I wanted to help, but this was such an undisturbed territory," Murray said. "I never thought I would go back in time to read about paralysis."

Bailey, now 11, suffers from frequent headaches and is weak in her right hand, but she is able to go – something her mother gives to Murray's historical research. "Melissa and her resourcefulness – I believe it's 100 percent why Bailey walks again," said Mikel Shehan.

Bailey Shekhin's medical therapist, Melissa Murray, has looked after children with paralysis to help Bailey recover from AFM.
Looking back in time to acquire medical wisdom from the previous illness, as Murray and others did with AFM, is "remarkable," according to David Osinschi, a professor of history at the University of New York, and author of "Polio: an American story, which won the 2006 Pulitzer Prize for History.

"For me, it's incredible. I've never seen such a connection," he said.

Lessons from the past

When Olivera brought her son to a group meeting to support members of the post-polio police at the center of the community of thousands of homes, she initially thought she might make a mistake. These people were more than half a century older than her son – can they really help?

Then he saw one of the polio survivors sitting in a motorized wheelchair taking their leg with grabbing the skin on the tip of the thigh, just as someone could choose a puppy from the throat of the neck.

CDC escalates the response to polio-like AFM disease

It was a very specific movement that was known to Oliver, because Lucian cut his foot off.

He knew he was in the right place.

So did the polio survivors.

"The boy's sight recalled memories for us, it was like a deja vu," said 79-year-old Cheryl Boyd, who suffered a polio when she was 9 years old.

Advice to the survivors came almost immediately, and some of them were quite accidental. When Luqian caught his thigh and put his leg on the table, Olivera, who went to a school of ethics as a girl, won. Polio survivors laughed.

"They said:" He stretches his leg, and we do it! It's good! "Oliver recalls." So now I say – break all the rules of etiquette! "

While Norma Pooh watched Lucian and heard his story, she was reminded of her own story. Both she and Lucian fell ill when they were very young – Puch was 18 months old, and Lucian had 11 months. Like Lucian, she carries the support of her left leg from the ankle to the hip.

Watching him made him remember a painful incident when he was a young woman who worked as a receptionist in a construction company in Los Angeles. One day he went out to rest. She was dressed in a miniature classic of the 70's.

"Hey, cover that thing," cried the passer-by.

Cases of polio are not reduced; The WHO fears a global resurgence

He was thinking of her foot.

"I was so crazy – I thought it was an idiot!" She remembers Puch, who is now 65 years old. "Should I shame because I have this metal thing on my leg?"

She told Olivera not to listen to the hated and to think of Luciana as the same as any other child.

"When I was a girl, I did not think of myself as different or compromised, although I could not go as fast as other children," Puch said.

This advice made Olivera realize that she and her husband are needed to treat Lucian just like his three older brothers and sisters.

"Until that moment, we had it in one bubble, we are always on the move, we held it, or he was always right next to us, but it would not have helped him at all," she recalls. "After the meeting, my husband and I talked and decided that we will not raise Lucyan for this disability. We should have raised Lucyan to live with a disability."

Today, at the age of seven, Lucian is a happy little boy with no signs of self-pity. He goes with his bracket and walker or scoots on the floor. He works like his brothers and sisters, but in a modified way – for example, to clean his room, takes toys from the floor and puts them in a bag accompanied by his patron, and then places them back on the shelf.

Not wanting to lose the wisdom of the older generation, Olivera arranged for Kurt Sipolski, a survivor of polio, who wrote memoirs, "Too early for flowers," to be on the board of the group she created for parents of children with AFM. Sipolski regularly gives advice to this new generation of parents whose children are paralyzed.

After the meeting, one of the survivors of paralysis knit Lucian's pair of thick woolen socks, because people with paralysis often have cold feet.

Socks became a friend of Olivera from the day that changed his life.

"That meeting calmed me down and gave me such an insight," she said. "Everyone said that polio did not limit their success, but had careers, had families, made me see that Lucian would do the same."

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