July is AFM Awareness Month!

During the month of July, we are recognizing Acute Flaccid Myelitis (AFM) Awareness Month. Throughout July, we will be amplifying stories and sharing information so that more people will know about the signs and experiences of those impacted by AFM. You can also get involved by attending the AFM Awareness Virtual Event, together with the Acute Flaccid Myelitis Association, where you can tune in to learn from guest speakers and connect with others in the AFM community. Awareness is of vital importance in helping those with rare disorders to receive an accurate diagnosis and receive the care they need.

Acute Flaccid Myelitis (AFM) is a rare neuroimmune disorder. The Orphan Drug Act defines a rare disease as a disease or condition that affects less than 200,000 people in the United States. Since 2014, the Centers for Disease Control and Prevention (CDC) has confirmed over 682 reports of those affected by AFM, which may be an underestimation because not all cases are reported. There was an increase in cases in 2014, 2016, and 2018 which may have been due to a respiratory illness that causes cold-like symptoms. Following that pattern, an increase was expected in 2020 which did not occur, possibly due to the additional precautions taken because of the COVID-19 pandemic. A projected increase also did not occur in 2021, and A quick and accurate diagnosis of AFM can lead to prompt acute treatment that may result in better outcomes. Until 2014, when surveillance for AFM began, many of those who experienced flaccid limb weakness and/or paralysis characterized by AFM may have been diagnosed with transverse myelitis or Guillain Barre Syndrome. Visit our AFM webpage to learn more about the symptoms, treatments, prognosis, and more for AFM.

We asked members of our community to share how AFM has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

“I have adjusted well to life after AFM even with some remaining paralysis and weakness. People are always shocked that I handle my diagnosis and disability in such good spirits. Some days it is painful to imagine the life we could have had if a virus had not interrupted our reality. I know there are things I wanted to do in life that will never be possible for me again, at least in the way I imagined. But every day I am incredibly happy to be alive and to have the love and support of those around me.”

-Adam S. Read more about Adam’s story.

“Marcella has nine siblings, so this illness has been a challenge for everyone in our family. We have adjusted to our new lifestyle, and we are extremely grateful that Marcella is still with us today. The whole family helps to make each day go by as smoothly as possible. Marcella was an active little girl who loved the outdoors playing with her siblings and dancing. She has accepted and adjusted to her new way of life immediately. We do not question “why” this happened. We take one day at a time and thank God for all our blessings.”

-Marcella’s Mom (Amy P.) Read more about Marcella’s story.

“My two-year-old daughter can no longer run or play like a toddler should be doing. It is so hard to see her just sit there and not be able to play with other kids. She was just beginning her independence and now that has been taken away. I want our life to be normal again. My hope is that she will be one of the success stories. That one day she will be able to walk, write and play again. But we just don’t know. No one knows, not even the doctors.”

-Kayla’s Mom (Sabrina B.) Read more about Kayla’s story.

“The biggest lesson I’ve learned is that it takes a lot of hard work to get over AFM, and I have to do my exercises and PT every day in order to get stronger.”

-August M. Read more about August’s story.

“There is so much more research that needs to be done on rare neuroimmune disorders. There is no cure, and the frontline medications were not guaranteed to stop the paralysis or reverse the damage. We were riding on prayers and hope. After the medications were administered only time would tell if Noah’s paralysis would reverse or improve. If recovery was possible, it would take time and lots of it. We have come a long way since October 3, 2014. I am happy to report Noah is walking with a gait trainer and has a very hopeful future in front of him. This was made possible by the quick actions of physicians who were educated (which is rare!) and knew about this rare disorder and their quick thinking. Most of all it’s possible because Noah works every day to gain back what AFM tried to take from him.”

-Noah’s Mom (Elisa H.) Read more about Noah’s story.

Finally, help us get the word out about Acute Flaccid Myelitis Awareness Month! Contact your legislators, organize a bake sale, start a fundraiser, or share your story. Help us spread awareness by sharing our social media posts and #ShareTheFacts during this month and beyond.