AFM Awareness Month – July 2020

As we turn the page over to the next six months of 2020, there are still many questions about the current pandemic. While the COVID-19 pandemic has dominated headlines and we continue to be extremely cautious, we understand that people still become infected with other viruses and experience other illnesses.

Acute Flaccid Myelitis (AFM) diagnoses have spiked in an every-other-year pattern since 2012. Although the actual syndrome of AFM has been around for many years, the biennial spikes are more recent developments and have been linked to the increase in circulation of particular enteroviruses (although not all AFM diagnoses are caused by enteroviruses).

Based on this every other year pattern, 2020 is a year in which these enteroviruses and, subsequently, AFM, are expected to spike again. Many have asked if public health measures that have been put in place such as social distancing, stay-at-home orders, wearing masks, and messages that reiterate the importance of handwashing and not touching one’s face will impact this spike. The answer is, it could, we hope it will, but we truly don’t know. Regardless, the public, public health officials, medical professionals, and our community need to be prepared for a potential spike in AFM diagnoses this year.

Since AFM spikes generally start in August, we’re highlighting the month of July as AFM Awareness Month. Together with our partners, the Acute Flaccid Myelitis Association (AFMA) and the support of a network of professionals, we hope to reach as many as possible with the imperative message of recognizing signs and symptoms of AFM, so an accurate and swift diagnosis may be made in order for acute treatments to be administered. We know the sooner we can detect, diagnose, and administer acute treatments, the better the potential outcomes are for those with AFM.

Why should our rare neuroimmune disorder community care about AFM Awareness Month? Because these disorders are all related. Until 2014, AFM was included under the broad umbrella of transverse myelitis (TM). There are likely many in our community who may have been diagnosed with TM, but if they were diagnosed today, they likely would receive an AFM diagnosis instead. There are distinct differences between AFM and TM, but for some, the diagnosis may be somewhere between the two, as some people experience both gray and white matter issues. There are children who are diagnosed with AFM who may need to be monitored for persistent MOG antibodies. Some cases may also involve the brain, making it important to make sure the diagnosis is not ADEM.

The few distinct differences between the rare neuroimmune disorders are largely overshadowed by the similarities between these disorders. The diagnostic tests, the imaging, the acute treatments that are administered, and the subsequent rehabilitation and long-term treatment strategies that take place for an AFM diagnosis could be nearly identical to a TM diagnosis. In ADEM, AFM, MOGAD, NMOSD, ON, and TM – we don’t have a particular treatment that we know works beyond a shadow of a doubt to stop an inflammatory attack that is happening in the central nervous system. Much of what we’ve learned in AFM to date has stemmed from what we’ve studied and known about the other disorders. What we will continue to learn from AFM will only benefit those with the other rare neuroimmune disorders. Dr. Greenberg’s talk at the 2019 Rare Neuroimmune Disorders Symposium (RNDS) was an excellent “primer” on why we should study these disorders together, why it makes sense for people with rare neuroimmune disorders to be united as a community and to support one another. AFM has always been a part of the SRNA community. AFM will continue to be a disorder for which we emphatically advocate for education, research, and support of those impacted by this rare disorder.

Show your support of the AFM and larger rare neuroimmune disorder community by sharing the AFM Awareness Month social media posts and use the Facebook frame to inform even more to #KnowAFM. Stay-tuned to SRNA social media, our blog, and events as we share stories, resources, and additional programming. Share what you learn throughout this month with your family, your friends, and even your physicians.