A diagnosis of a rare disorder like acute flaccid myelitis (AFM) may feel very isolating. But there is a community of individuals and families who share the same diagnosis and common experiences. You are not alone.
Since late summer, news about an increase in enterovirus circulation (EV-D68 is an enterovirus known to cause AFM) has been on the rise. As such, awareness of parents and physicians to be on the lookout for symptoms of AFM, especially following a cold or flu-like illness, also increased. Today we’re sharing some up-to-date resources and information to help answer questions about AFM and support those facing an AFM diagnosis as quickly as possible.
CDC: Case Reports
The CDC has been tracking and investigating suspected cases of AFM since August of 2014. According to their AFM Cases and Outbreaks page, as of October 19, 2022, there have been 25 confirmed cases out of 55 reports of patients under investigation (PUIs). Learn more about the CDC’s work in AFM on their website.
Our detailed and recently updated AFM Factsheet includes information on signs and symptoms, diagnosis, acute treatment, prognosis and management, and long-term care. It’s an excellent resource for sharing with various healthcare providers, educators, and even family members and friends to help them understand an AFM diagnosis. You can also find an overview of this information on our website, and it is also available in Spanish.
AFM Physician Consult & Support Portal
The portal aims to connect medical professionals and offer 24/7 consultation. Physicians suspecting an AFM diagnosis can fill out the online form and establish a peer-to-peer consult for clinical support with physicians in the AFM Working Group. Share this with your healthcare providers and know there is a form specifically for families and caregivers seeking support, too.
No Time For The Moon Children’s Book
If you are a parent of a child with AFM, or a healthcare provider treating children with AFM, order your free copy of our children’s book published with the Centers for Disease Control and Prevention, “No Time For The Moon.” The book includes an “AFM Guide for Grown-ups,” AFM FAQs, and a fun template for children to use to share about themselves.
We also have several podcast episodes on AFM available in our Resource Library. Below are just a few talks worth highlighting:
- Ask the Expert: My Child Has Just Been Diagnosed With AFM. What Do I Need to Know? – ft. Dr. Sarah Hopkins and Sarah Stoney, MSW, LSW. A discussion on what families can expect, the importance of a care team, the role of a social worker, and more.
- Ask the Expert: An Update on Poliomyelitis – ft. Drs. Amy Rosenfeld, Sarah Hopkins, and Katie Lockwood. A discussion on the major symptoms of poliomyelitis, the two types of poliovirus vaccines, and how poliomyelitis differs from acute flaccid myelitis (AFM) and transverse myelitis (TM)
- Ask the Expert: The Role of CDC and Public Health in AFM Surveillance (Part 1) – ft. Dr. Janell Routh of CDC, Dr. Ben Greenberg, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. A discussion on the process of how AFM cases are diagnosed, reported to public health agencies, sent to CDC, and classified
- Ask the Expert: Parents Perspectives on AFM
Community Stories and Support
If you’d like to hear from others with AFM, stop by our “This is Me” video library and hear personal stories from those diagnosed. Also, be sure to check out our Support Group Network to see a list of available support groups and the calendar of upcoming meetings.
Additional AFM Resources for Families and Healthcare Providers
Be sure to visit our Resource Library where you’ll find additional resources pertinent to both families and healthcare providers. These resources include our AFM Resources for Families and Clinicians document, noting the most frequently used resources from the AFM community, as well as the library of our latest symposium videos, resources from the AFM Working Group, and much more.
Finally, if you’re a parent of a child with AFM, join us at our annual Quality of Life Family Camp. Camp is open to families with children diagnosed with ADEM, AFM, MOGAD, NMOSD, TM, and ON and are 0 to 20 years old. Sign up for our emails to be the first to know of our 2023 Family Camp programming!
SRNA is dedicated to keeping you up-to-date with the latest information regarding the rare neuroimmune disorders that impact our community members and families. If you have any questions, or if we can be of support or resource to you, don’t hesitate to contact us at any time at [email protected].