On Tuesday, July 9, 2019, the latest CDC Vital Signs report was released, focusing on acute flaccid myelitis (AFM) and the critical importance of timely diagnosis, treatment, and reporting of the condition by clinicians to local health departments. It marks the beginning of a significant awareness campaign that we all may take part in to enhance knowledge of this rare neuroimmune disorder. Since AFM typically spikes in the late summer and fall months, now is the time to be especially aware of the signs and symptoms of AFM.
As an organization, parents of children diagnosed with these rare disorders, researchers, public health officials, and individuals who understand and know the drastic impacts of AFM, we ask you to please take time to review the latest report and the detailed information from CDC, located here. Share it with your clinicians, schools, health departments, family, and communities.
The CDC Vital Signs report includes an overview of AFM (both written and video), current statistics, infographics, a press release, and more. How you can help is by printing or forwarding the detailed information to your contacts. You can also use the press release as a reference to follow-up with your local news outlets about this urgent CDC request. It is also an opportunity to check-in with your state and federal legislators to ask for their support in requesting state and federal funding for AFM research and reporting, and increasing awareness.
To further your awareness and knowledge of AFM, an AFM Information Sheet and valuable resources about the disorder are available on the Transverse Myelitis Association website. You may find them in our Resource Library. Our partners at the Acute Flaccid Myelitis Association (AFMA) also offer resources and support for families facing an AFM diagnosis.
The Siegel Rare Neuroimmune Association also offers a direct resource specifically for physicians who may suspect an AFM case. The AFM Physician Consult and Support Portal provides 24/7 peer-to-peer consult for clinical support from our partner physicians at the University of Texas Southwestern’s Transverse Myelitis Center or the Johns Hopkins Transverse Myelitis Center.
Being aware of the possibilities as we come into peak season for viruses associated with AFM, being able to recognize the signs and symptoms of AFM, and helping to ensure timely and accurate diagnoses are our first steps in ultimately stopping this rare neuroimmune disorder from striking our children and families.
Stay tuned as we continue to create awareness with CDC and the AFMA of this rare but often devastating neuroimmune disorder.