Mom’s Post On Facebook Helps Another Family Get Diagnosis For Rare Childhood Illness

child in hospital

Facebook is known for reuniting people. Through this social network, distant relatives have found each other and long lost school mates have connected. Now it appears that the popular media platform is helping people to diagnose and treat rare diseases.

Acute Flaccid Myelitis (AFM) is a rare disease that children can contract and that is a relative of polio. Because of its rarity, many parents are unaware of it and its symptoms. Rachel Scott experienced the disease firsthand with her son 3 years ago and since then, she spends much of her time sharing her story and trying to educate others about it.

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Catching AFM early and treating it is crucial to fighting this disease. Unfortunately, it wasn't until a week after Scott's 5-year old son Braden started showing symptoms that he was diagnosed and treated for AFM. By then, he'd already lost his ability to swallow as well as all movement in every part of his body except for his finger's on his left hand. Rachel is so diligent about creating awareness around AFM because she believes that if they'd caught the disease sooner, doctors could have been able to stop it from spreading.

Her diligence paid off when Scott connected with Elizabeth Cardone on Facebook but when she first connected with her she could not have known how much her story would impact Cardone's life. Cardone remembers that her heart broke after reading Scott's story but at the time that she initially came into contact with Scott's page and read her story, she was unaware that she would soon go through a similar experience.

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Just last month, Cardone's 2-year-old son, Corbin, was recovering from a cold when he seemed to lose his ability to walk. Going into detective mama bear mode, she remembered Scott's story from Facebook and thought that her own son's symptoms sounded very similar to Bradens.

She sent a direct message to Scott inquiring more about the symptoms and also contacted her son's pediatrician to share her theory. It turns out that he did indeed have AFM and that her quick thinking thanks to Scott's sharing helped Corbin to get the treatment that he needed before the disease devastated his body. This serendipitous connection through the popular social media network saved the toddler's life.

The Center for Disease Control & Prevention (CDC)'s has been paying close attention to this disease since 2014. 28 cases of AFM were confirmed this year but in 2018 there were 228 cases of AFM that were confirmed. Both moms want other parents to understand that just because the likelihood of a child contracting this disease is small, doesn't mean that it shouldn't be taken seriously.

Scott advises that "If a child is experiencing limb weakness, or any difficulty swallowing, speaking or breathing following a cold, parents should seek medical care immediately." Both moms are hopeful that sharing their stories will help other parents to learn how to recognize the symptoms of AFM and save even more lives.

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