Abigail Palacios

Abigail Palacios

On September 14, 2018, our families lives changed forever and will never be the same again. This date is not only the anniversary of Abigail losing her ability to breathe, walk and sit up but she became paralyzed from the neck down and on a breathing machine. She crashed within 48 hours (about 2 days) of the onset of her fever and silenced the hospital forever. As she was the only child in the city and the then became the third child in the state of Georgia to be diagnosed with AFM and now has become a miracle. As we were told that she will never walk again and will continue to have multiple health problems and her future will uncertain, she was able to fight and graduate from ICU at the Children’s Hospital of Atlanta 4 months after her onset and do 3 months of rehab. She then set on to be on CNN to bring awareness and show the world what was taken from her and that she one day will be herself again even against her odds. Abigail was able to graduate from rehab and sent home in January of 2019 in a wheelchair will full paralysis.

In March of 2019, we were told that her arm was dead, and the nerves were not responding. Her father and I found a Surgeon to take the risk to open and do a nerve transfer on her left arm. As he went in, he found the tests were wrong and the nerves were working. The risk 4 doctors told us not to take was worth it. As the risk was high because of her being 6 months post her onset, underweight, paralysis and medical complications, the surgery was not recommended. My gut told me to take the chance, Abigail can handle it and a miracle happened at 11:22 when the doctor walked in and told us we had a chance.

It is now May, and she is in therapy 5 times a week Monday-Friday for 2 hours a day and I have set my life on hold to beat the odds of medical professionals and on a Thursday afternoon Abigail was able to walk on her own.

In July of 2019, Abigail has made an almost full recovery and walking, running, sitting up and beating the odds. Her left arm, the first thing to go has been a slow process. A nerve heals only a couple of milliliters every day and it could take years, even up to her adult years for her arm to move again. Today in 2023, she can move her arm up to her elbow and has couple finger movements which means the surgery was a success.

As we had to put her left arm on hold in 2020, her spine became a medical concern affecting her left lung and kidney and she needed to complete the cycle of meta casts. She was in surgery and has casts put on every 3 months repeatedly. No bathing, no swimming. No childhood again. We were waiting for a surgery date in 2022 when we were told the casts were not working and she now must have the spinal rods put in, but she did not meet the requirements because of her weight. I did not give up, I found another doctor who was able to complete the job and help her, as tests were proving medically, she needed it completed.

During the spinal rod testing clearances, we found that her diaphragm was paralyzed. Therefore, needing a surgery to pinch and give her room for her left lung to expand. Fixing two medical conditions in one, so we went with the surgery. In January of 2023, she had her spinal rod surgery and did better than the rest even with all the risks, and again beating her odds.

Abigail now has more freedom and more life in her than she did at 2 years old prior onset. She has adapted and learned from this horrific experience and now wants to show the world “if I can, so can you.” She always wanted to be a cheerleader and once her Orthopedic doctor gave her the clearance (after lots of negotiating) we got to work for the start of her journey to be an example. She tried out for the only cheer competition team in our city and made the team! She was even asked to be a flyer (since tumbling is a work in process and not cleared to tumble) and to compete on two teams!

Her goal is to show the world where she started and where she is going. Things that people have told her are impossible or she could never do, and she has done them. Each day, we complete a new goal, and she improves and works hard every day to get the life that was taken from her. As life is unfair, she will understand this one day. Abigail wants to show other fellow AFM family members to never give up and to keep fighting.

Today, we are currently cleared to start working on her left arm again years after on her onset. We have hand, nerve and shoulder appointments coming up and as she keeps fighting against her odds, she will show up and be rejected repeatedly but leave with her smile and try again but her story will not end or her will to be the example for others affected by AFM, she can be their voice, their faith, their will, their power and above all their sister. Abigail's story will be continued....

So, with that said stay tuned!

AFM Author McKenzie Andersen

McKenzie Andersen has AFM, but that hasn’t stopped her! She has become a journalist and at just 15, has already been published on the front page of the Oregonian. Check out her autobiographical story below!

Geuko's Acute Flaccid Myelitis Story

This time I tell this story from a father's point of view.

The birth of your first child is special.  You are on seventh heaven.  You want to teach your son everything.

Mother works morning and afternoon, Dad works evening and night, a lot of father son quality time, you build a bond, you want to protect it well.

Then suddenly when he was almost 4 something happened that you can't help but just stand by him.  Make sure he doesn't get scared.  Within 24 hours he deteriorates until his breathing stops.  The doctors were able to save him just in time.

They put him in a sleep coma for 5 days, in an isolation room because the virus is very contagious for the first few hours.  They don't know what to do.  You feel so powerless.  Then he wakes up, paralyzes, intubates, all kinds of IVs and cables for the monitors.

He can't say anything.  But you can see the question in his eyes: "help me!!"

We always have a tune before going to sleep, where he finishes the tune.  This time he couldn't say it but let 1 big crocodile tear.  That moment I broke into a thousand pieces.  I never got over that.

You want to make him better but even the doctors don't know what it is and what to do.  He is at that time the first in the Netherlands.

Your child is physically broken, your family is broken, your youngest son wants nothing to do with you because you have been away too long, you are broken because everyone is pulling on you, your wife is broken, your relationship is broken, you wants support and your wife wants support from you but you can't give it because you ask for help yourself.  Everything is "on hold" because Geuko has to get better.  You don't trust the doctors anymore because they don't know and don't want to accept anything from the outside.  Always ask for a second opinion, that is your right.

You will get different values ​​in life, you worry about other things.  Your relationship gets a different place in the rankings, you let it go, jealousy is exchanged for understanding.  You're better off worrying about other things.

Nobody is going to understand it only the people who have experienced the same, that's why the AFM community is very important there are the only people who understand.

You find out who your real friends are and what your family can do for you.  Some friends can't handle your situation and walk away, others don't understand your way of thinking and turn their backs on you.  You can't explain it either because you barely understand it yourself.  Family gets jealous because you get more attention than the rest because you need the help.  Antivaxxers attack you and call you bad parents, other people think you can work, try to explain to such people that it is not that easy.

Because of all the regulations and ignorance they even send him abroad.  After 140 days PICU for storage.

He is no longer welcome in his own country for a year and a half and we beg to send him to the Kennedy Krieger Institute.

We're still fighting for it, we've even had to hire a health insurance doctor to get the insurance over there—they can offer him perspective in life there.  We are standing still now, they can make him stronger and in the meantime we hope for a few small miracles.

Getting his ventilator in order, that is only possible in the KKI, they cannot manage it here, rehabilitation in their own country is also not allowed here due to ventilation rules.

You need so much patience.

Geuko can no longer embrace me that hurts, you often argue with your wife because you do not understand each other because you think differently and are both broken, even after 6 years.  You have stress and you eat your stress away.  10 kilos more.

My tip: Exercise, it clears your head and gives you new insights.

Rely on the family and friends who are willing and able to help you.  Go collect money and register with the AFM community, you will need them.

AFM is rare and real.

Remember this: "accept the diagnoses, but not the prognoses". (Victoria Arlen)

Keep on fighting for your child even if your not seeing a end!! Take a breath and a rest and you can go further.

We still have hope, when we see Braden Luke Scott.  In the same period, Braden and Geuko became ill and almost the same loss.  Rachel was my first contact with someone else with AFM.  Braden is lucky to have the right people around him, thankfully.  look at him now, we are very proud that he has made it this far.  That gives us hope.  This allows us to hope for more recovery than now, the KKI specialists say so themselves and that there is more potential.  So we stick to that.

Resilience - Evy's Acute Flaccid Myelitis Story

Hello! My name is Evy. I'm 27 years old and living in the Kansas City area. I am the first adult in Kansas City to be diagnosed with AFM. Before AFM, I was highly active and healthy. I was a single mom of two and dog mom of three. I was always on the go and stayed busy.

November 2019 was a normal day until I noticed a weird sensation coming from my feet and legs. It made me a little worried so I had a friend stay with me. A few hours went by, and suddenly I'm not able to walk or move my arm and had a difficult time breathing. My friend drove me to the emergency room. Within six hours, I was unconscious. I remember waking up to doctors and nurses calling my name, I remember hearing them say they were trying to get a hold of my parents. I remember seeing flashlights lit into my eyes. I realized I couldn't speak. I had no idea why. Then my eyes shut again. I woke up in the ICU one and a half weeks later. Not realizing that I was paralyzed from the neck down and not realizing that I had a tracheostomy.

At first, doctors thought I was diagnosed with meningitis. After a few weeks went, they said Guillain Barre Syndrome (GBS) instead. They said I’ll be back to my old self with physical therapy. They said my recovery can take 6-12 months.

I was transported to Madonna Rehabilitation Hospital in Lincoln Nebraska for PT and vent weaning. I spent three months in their facility and going back and forth to the ICU at Bryan West Hospital. After more tests and no improvement on my condition, the neurologist diagnosed me with a rare condition called AFM. This was a lot scarier to me than GBS after my asked the neurologist why didn’t they didn’t detect that early on and if they are sure this time.

I was transferred back to Specialty Select in Kansas City to focus on vent weaning in February 2020. The Covid Pandemic didn’t allow my family to visit me anymore. My parents and kids visited me using video calls and looking through a window. I was discharged June 2020 but went to 3 other hospitals until September where I was finally “home”.

It was very difficult for me mentally from being a completely independent parent to being someone who is completely dependent of others. While in the hospital, I always felt so much guilt. My family and friends had to take on responsibilities that I had chosen in life. I could not be there for my kids like I wanted to be. Learning to accept the circumstances for what they are made me stronger. I hope my resilience will inspire others, especially my children.

Coming home was a very big change for them, my parents and also me. I had to give up my house and move back in with my parents after living independently for 10 years. Something that I've had to learn is that it's OK to ask for help.

Since I have been home, I am able to see my kids every weekend and holidays. Even though I am not physically able to take care of them anymore, I am still thankful for every moment I get to see them.

At first, my kids do not want to be near me… afraid they may unhook my ventilator or hurt me. Now they are so excited to help when they can. Whether it is feeding me, scratching my nose, or even getting to push the button on my nebulizer. It makes me proud to see their heart and their growth through the scary experience.

I am still trying every day to get better but at the same time, learning how to adapt with what I have gained. It is frustrating sometimes to ask for help from my caregivers but gratefully reminded for the second life I was given. My goal obviously is gain as much progress as I can. Whether it is getting off the ventilator or getting out of my electric wheelchair. My ultimate goal is to raise awareness about this very rare condition and to help others as they go through their own journey. As I am taught to be vulnerable, I share my experiences and feelings as much as I can.

Ordinary to Extraordinary - Cooper's Acute Flaccid Myelitis Story

Cooper’s life changed from ordinary to extraordinary when he woke up from his afternoon nap paralyzed. He was 9 months old and left medical experts stumped and searching for answers and treatments. 

Cooper is currently 3 years old, and was presumably affected by AFM in September 2018. However some medical professionals say even within this rare diagnosis, he presents with oddities that make it difficult to draw absolute conclusions. When people ask about Cooper and AFM, I feel like I don’t know where to start. Cooper’s story is hard to explain and sometimes it feels like there are no good answers. A lot of the time, we just say he is a medical unicorn. It’s kind of our family joke.

When we first heard Cooper had AFM, it was after we had already been in the PICU for a few months. His original diagnosis was botulism and then TM. I was confused more than anything because I had never heard of AFM before despite working in the Pediatric ICU for 5 years as a RN. Having his diagnosis seemingly change made me feel very uneasy as I was losing confidence in the medical system that I was relying on to help him through this. I felt angry that I didn’t know about this disease before it hit our family and frustrated that there was not more research or direct answers as to why someone gets AFM or how to effectively treat it. I also felt so helpless watching Cooper struggle to breath and unable to move.

AFM changed how Cooper’s body and mind work. Initially, he could not even hold his head up when laying at an incline. He also relied fully on a ventilator to breathe and a tube that ran down his nose into his stomach to feed him since he was unable to swallow. He required 2 surgeries; a tracheostomy in his airway so that he was more comfortable with the ventilator breathing for him, and a Gastrostomy Tube directly through his abdomen into his stomach so that we could feed him. All the medical equipment in our house and education we had to complete to safely bring Cooper home from the hospital and provide for his basic needs was very stressful and overwhelming for Cooper’s Dad and me at first. We struggled a lot the first year finding balance.

Shortly after Cooper got AFM, a lot of his bones started breaking during his regular activities. He had a total of 12 broken bones in the first 6 months. Now he gets medicine every 6 months to help his bones get stronger. This has really helped him to be able to participate in the therapy that will get his muscles stronger. Gradually, he learned to breathe without the vent and without all the same muscles that most people have. His diaphragm became extra strong to make up for the weaker muscles. Now when he breathes, it’s all belly breathing and he is really good at it. Also, he has learned to swallow small amounts of baby food but those muscles still get tired really fast so most of his food still goes through his tube in his stomach.

Cooper was very young when AFM stole a lot of his body’s sensation and muscle functions. He has a difficult time moving his muscles because he can’t feel them moving. Instead of exploring a lot like most toddlers do, Cooper has a strict “work-out” routine consisting of PT, OT, Feeding & speech therapy. We have to send intense levels of electricity through his body 4 days a week to help him gain strength, coordination, and awareness, and hopefully heal the nerves that AFM damaged. 

Another unexpected struggle Cooper has to deal with is the inability to speak. He has to rely on the people closest to him to read his non-verbal communication and sound effects to try and help him. Recently, He has been learning to use an Ipad with special software that tracks his face and allows him to pick words off the screen to communicate with us. He is still learning how to use this device and the training seems to frustrate him. 

It is very obvious that Cooper is different from other 3 year olds. We often have to explain what AFM is to people when we first meet them. We never try to hide that Cooper has AFM, but sometimes we avoid going new places or situations that would be hard for him like places where wheelchairs can’t go or where his presence would be distracting. People often want to know all about Cooper and sometimes our family gets really overwhelmed by the questions. It kind of feels like we are “on display or on stage” whenever we go out in public. It’s hard to enjoy things we use to do because it’s quite a production getting Cooper out and about. Add in the staring and questions and sometimes we just prefer to stay home and out of the “public eye”

It would be most helpful if people knew that AFM exists. Most kids just say I have ADHD, or I broke my arm and people understand what that means. When we tell people Cooper has AFM, it doesn’t ever really answer their question of why he is different and I find it exhausting to explain AFM to everyone who asks. I feel like I spend most of my time talking to other people teaching them about AFM. Sometimes I miss talking about things other than AFM or Cooper’s medical needs. I wish more people wanted to talk about what Cooper likes to do or how his day is going, but I know that is hard since he can’t speak. 

Cooper is different from other kids his age, but we have learned to embrace his unique situation as a family. We live by a quote from Dr. Suess, “Why fit in when you were born to stand out” Afterall, who is actually normal? Though we have accepted his challenges, we still aggressively seek every available treatment to help Cooper regain control of his body and help him to meet his personal potential.

AFM Mom, Robin Roberts, Prevails in Having AFM Diagnosis Code Established

Read below for the story of Robin’s efforts and the important impact it has for those affected by AFM.

As the parent of a child with Acute Flaccid Myelitis (AFM) and having served most of my professional career in healthcare, I was dismayed to learn that AFM did not have a diagnosis code of its own. When my son Carter was in the acute phase of his illness, this wasn’t my primary concern, but upon reflecting, I realize that having a specific diagnosis code would have significantly helped us through the journey. 

You see, a claim for every doctor visit is the fundamental and primary way to communicate to an insurance company why and when a patient was seen and what’s going on with them. Claims data, which includes a code for primary and often secondary diagnosis, is super important. Claims data is what helps the healthcare team paint a picture for insurance about how sick a patient is, what’s ailing them, how long a problem or symptom may persist, and can also play a major role in the approvals and/or denials of services and equipment. The powers-that-be at the insurance company pairs this claims data with clinical guidelines, suggestions, and formal medical protocol to help them decide what they should and shouldn’t approve as well as what may or may not help a patient.  Claims data is what you see on your doctors’ bills and the explanation of benefits (EOB) that you get in the mail. In essence, it is structured information that is created to help multiple agencies, groups, and individuals manage everyday healthcare business.

For our family, a specific code for AFM may have prevented hours of insurance appeal calls and letters that could have instead been spent reading to Carter or playing another game of Pop the Pig.

I knew a specific diagnosis code could help our community at large. If we wanted the data to support clinical needs, disease prevalence, and research--we needed a code. The generic codes available varied by patient, and even when combined with other symptom codes, were not specific enough for this rare disease. With AFM, so much was out of my control, but one thing I could do was try to help the future families.

During the course of the same day, I received a denial for Carter’s repository medication and a second denial for his wheelchair, I knew it was time to take action. I started by researching the process of creating an ICD-10 code and found that it starts with a division of the Centers for Disease Control (CDC) that manages the International Classification of Diseases or (ICD Codes).

I created a write-up about what the code was for, explaining why the existing codes didn’t meet the need for the condition, and how all the clinical specifics of AFM could coincide with the system. My first attempt at making the case for a needed code failed, but that didn’t deter me. I just knew that to succeed, I would need to be more thorough. 

Thankfully, the AFM community provided articles, publications, and information to objectively support everything that I asked for to help make the case. In fact, several weeks after submitting the write-up for a second time, I got a call from this special division coding. The voice on the other end was Cheryl. “Ms. Roberts?”, she asked. 

“Yes, this is she.” I replied

“I want to thank you for your request for a new ICD-10 code for Acute Flaccid Myelitis. However, I have one question,” she stated. “Are you submitting this as a physician, on behalf of  a medical society, association, hospital, or academic institute?”

“Umm, none of those actually.” I went on to explain that as a matter of fact, although I work in healthcare and was the parent of a child who has AFM, I was none of these things or places. “If it makes a difference, I can submit it as part of my healthcare company,” I said. 

Cheryl explained that this wouldn’t be enough – that while I could present the case for a new code at an upcoming meeting and field questions, I would need the endorsement of a reputable clinical or health information management group in order for the case to proceed. 

So, like our community has taught me, and as most of us do, it was time to boot-strap some help. I took to Twitter and combed through old emails to find contacts I had been in communication with over the last several years to ask for support. I found Dr. Janelle Routh of the CDC, Dr. Nath at NIH, a contact at The American Academy of Pediatrics, the hospitals, and physicians who helped treat Carter in Richmond, Johns Hopkins, Kennedy Krieger, Dr. Kevin Messacar in Colorado, and many others. 

Luckily, there were two favorable replies. 

Both Dr. Janelle Routh at CDC and Kevin Messacar at University of Colorado Children's Hospital – a hospital that dealt with one of the more widely known outbreaks of AFM – agreed to back the request not just as individuals, but with the support of their organizations. Together, we presented the case for a new code specific to AFM, responded to numerous questions, and even had to push back on some medical coding experts who opposed the need for this disease-specific code. Many of these professionals thought the generic and varied ones used should suffice. I was undeterred and with the help of Dr. Routh and Dr. Messacar, was able to respond to each question with an appropriate answer. 

This week, I am beyond thrilled to announce that our efforts to advocate for a specific diagnosis code for AFM have paid off! Effective October 1, 2021, AFM will have its own diagnosis code. 

This will be helpful in tracking disease prevalence, complications, patient needs (i.e. medical equipment and therapies), aid researchers, and help align insurance coverage for disease severity when coded with other symptoms.

Starting in October, this diagnosis code can be used not just in the acute phase but also as a primary or secondary diagnosis for ALL related office visits. The NEW CODE for AFM will be G04.82.

Thank you to the AFM community for their help and support in getting this important step accomplished – it was a team effort and will make the AFM journey a little bit easier for families in the future.

Upcoming Webinar: An Update from CDC on AFM in 2020

As a person whose family has been affected by AFM, staying up to date on the latest information is important to us. On Thursday, November 12 from 3 – 4 p.m. ET, CDC is hosting “An Update from CDC on AFM in 2020,” an informational session for parents. This session will cover the latest on AFM and answer questions from the community. Register here: https://attendee.gotowebinar.com/register/6026545687945355532

AFMA's Rachel Scott Talks About AFM

Listen to Rachel Scott from Wheel Stories on Apple Podcasts. https://podcasts.apple.com/us/podcast/19-rachel-scott/id1482711891?i=1000467423634~

CDC Confirmation of Cases of Acute Flaccid Myelitis: Gray Matter vs White Matter Damage

Cases of Acute Flaccid Myelitis continue to peak in summers of even years—and it’s critical that all cases are reported by local health departments to CDC so the full scope of this disease can be realized. Not every case sent to CDC is confirmed, for a variety of reasons. A longstanding concern held by the AFM community is how CDC confirms cases where both there is damage to both the gray and white matter. The team of neurologists at CDC has put together an explanation walking through their process of MRI review.

For case classification of AFM, we rely less on quantifying how much gray vs white matter involvement there is, and give greater importance to the MRI lesion pattern. We evaluate each patient for both imaging and documentation of flaccid weakness, to see if they fit the surveillance definition of AFM. There isn’t necessarily a certain amount of white matter that would make a case “not a case”. While we consider AFM a disease of the gray matter, there may be reasons that we see white matter involvement. There could be “collateral damage” which can occur when the swelling of the gray matter extends out to the white matter. When we review images what we are really looking for are specific features and patterns that we see commonly in AFM patients.

The timing of the MRI is also critical to our classification process. We know that the spinal cord can look different in the initial phase of the illness compared to later in the course of disease, but often only one MRI is done per patient. There may be other issues that could impact our ability to classify a case, including the quality of the image that we receive. We try to take these factors into account, but this can make it challenging to be certain if a patient meets our case definition, which is why we have multiple neurologists review each case, especially the more challenging ones.

It important to note that our “confirmation” is not a clinical diagnosis. As clinicians, we understand that it can be confusing for parents to separate the clinical diagnosis of AFM from CDC’s classification process. But we do want to stress that those are two separate processes.

If your child’s physician has diagnosed your child with having AFM, we encourage you to stick with their doctor’s diagnosis. It may be that our team at CDC did not have enough required features or information necessary to confirm it based on our more stringent criteria. We are learning more and more about AFM as time goes on, but it may take more time to understand the full spectrum of the disease.

If you have not heard about the status of your case, we urge you to reach out to your local health department for clarification. More information about CDC Case Classification can be found here.

September Scholarship Recipient - Elizabeth!

Elizabeth is two years old and was diagnosed in August of 2017 at just seven months. Elizabeth is currently still weak from her trunk down. She requires trunk support for stability but is learning to walk slowly and with support. When Elizabeth gets tired you can tell that her right leg is worse than her left. She tend to drag it around more when crawling or trying to walk. Lifting it is much harder for her. If she gets frustrated she just drops down and army crawls. She has learned to compensate very well. Because of the donations we receive, AFMA had the privilege of assisting Elizabeth’s family in obtaining a walker to assist with her therapy.

Elizabeth is a sweet and sassy little girl that is both stubborn and independent. She loves to try to take care of everyone around her. She enjoys playing with Play-Doh, Barbies and baby dolls. She also like to spend time with her big sister.

Thank You to Our Fundraisers

AFMA would like to thank everyone who has organized a fundraiser and helped to provide funding for our organization! The amounts we have raised through Facebook Fundraising is particularly impressive, and every little bit counts. We hope that, the more we grow, the more we can help the efforts toward ending AFM.

We would like to thank Jessica Sommer and Ella Keirnan for their contributions toward AFMA goals. Jessica presented to her seventh grade class about AFM as she knew one of our AFM kids. She and Ella then organized a bake sale at the local little league field and raised $500 for AFMA! These funds went directly to AFM patients’ needs. These are the types of efforts that allow us to help families in need of assistance. We would like to thank everyone that has made a contribution. All efforts can make a huge difference. Thank you!

CDC Vital Signs

“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.”

-TMA

CDC Introduces "AFM Vital Signs"

The CDC has announced that they will be presenting an "AFM Vital Signs" report on July 9, 2019. This will include an update on CDC's most recent efforts in addressing AFM. Per Amie L. Nisler, MPH, for the CDC,

"Significant CDC efforts are underway to raise clinician awareness and encourage reporting, including targeted outreach to numerous professional medical organizations and our upcoming AFM Vital Signs report. CDC’s Vital Signs report highlights important health issues, and includes extensive promotion and outreach through the media, social media, and our partners. Our primary audience for the AFM Vital Signs is healthcare providers, such as emergency and urgent care physicians, pediatricians, neurologists, and rehabilitation specialists. Our calls to action will focus on early symptom recognition and specimen collection, and rapid reporting to health departments."

The AFMA is pleased to see the progress being made by the CDC and appreciates their efforts to increase awareness and collaborate with our community. Our community is comprised of many passionate and active families--their efforts to voice concerns continue to make a difference in our fight against AFM. The AFMA board welcomes any ideas on increasing awareness.

AFMA Partners with the Transverse Myelitis Association!

We are excited to announce our newly formed partnership with the Transverse Myelitis Association!

The TMA was founded 25 years ago by families of loved ones affected by rare neuro-immune disorders. They advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuro-immune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody associated disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. They invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We feel that the TMA’s goals are complimentary to our own in the fight against AFM. The TMA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Silver Seal of Transparency.

Through our partnership, we hope that our aligned organizations will support, educate, and advocate for those impacted with AFM and that our combined efforts will increase the progress being made. You can learn more about the TMA and access new AFM specific resources through these links below:

https://myelitis.org/living-with-myelitis/disease-information/#afm

https://myelitis.org/living-with-myelitis/resources/resource-library/?fwp_disorders=afm

Urgent Need for AFM Funding: How You Can Help

The continued rise of Acute Flaccid Myelitis is a public health issue that needs immediate action. The Acute Flaccid Myelitis Association has been working hard with the Transverse Myelitis Association to provide a way for our voices to be heard by our legislators. Funding for research and surveillance is desperately needed and filling out this form to contact your legislators is an important first step! Thank you to the TMA and to our community for working together to make the needs of our community heard in Washington. The following text was first published by the TMA on their blog.

Urgent Need for AFM Funding: How You Can Help

By GG deFiebre and Rachel Scott

GG deFiebre is the Associate Director of Research and Education of the Transverse Myelitis Association and Rachel Scott is a member of the Board of Directors of the Acute Flaccid Myelitis Association

Many in our community and around the country have become aware of the term “acute flaccid myelitis” or AFM because of recent news reports about the condition. AFM is an inflammatory disease of the spinal cord characterized by acute onset flaccid paralysis that predominantly affects healthy children and young adults. AFM is similar to the epidemics of poliomyelitis that struck the country in the 20th century, as many children with AFM are left with long-term paralysis, gait disturbance, and significant disability. In 2014, the Centers for Disease Control and Prevention (CDC) in the United States reported a rise in the number of AFM cases. After the 2014 clusters of cases of AFM came to light, the TMA and our Medical and Scientific Council added the newly coined AFM to the group of rare neuro-immune disorders covered by the organization. At that time, we did not know or understand enough about AFM, but we began to create educational materials specifically about AFM, and support and research opportunities for AFM. AFM, like many of the disorders the TMA focuses on, is a paralyzing syndrome that causes damage to the spinal cord and leads to weakness and paralysis in one or more limbs.

Unfortunately, the number of cases of AFM have been increasing, with spikes of cases occurring in the summer and fall every other year. The magnitude of the public health problem generated by AFM in the USA is reflected by the amount of resources needed for diagnosis, care and rehabilitation of children affected by the disease. During the outbreaks in 2018, nearly 50% of the patients required medical management in intensive care units and many of the children required prolonged periods of hospitalization and rehabilitation. Most of the children were left with significant neurological disability including limb paralysis and, in some cases, complete lack of mobility, and some have died.

Due to advocacy efforts of families affected by AFM, the Acute Flaccid Myelitis Association (AFMA), and the medical professionals treating those with AFM, the disorder has gotten the attention of the federal government. For example, last year Senator Kirsten Gillibrand called for $1 billion in funding for AFM research.

An AFM Working Group composed of scientists and clinicians from across North America has been working together with the TMA to publish recommendations for treatment of patients with AFM based on their experiences. The group spans approximately twenty-five institutions and contains over sixty members. Many of the participating institutions have developed research protocols for studying AFM, however, all of these studies lack funding from the NIH. We have a critical opportunity now to advocate for national funding of AFM prevention and treatment.

Why is this opportunity important for everyone in our community, even for those who do not have AFM? As we learn about one of these disorders, it will inform our understanding of all the other disorders. As we develop more effective therapies and treatments, all these disorders will benefit. So, while you may not personally be affected by AFM, those with AFM are part of our community of rare neuro-immune disorders, and we need to stand together when we can. We are stronger together than we are apart. This is a critical time to help those diagnosed with AFM, those who are not yet diagnosed, and our entire community. We hope you will take the time to fill out this form to send a letter advocating for federal funding of AFM to your legislators in Washington. It only takes a few seconds. All you need to do is fill out your address and the form will automatically find your representatives. You can even customize the letter to talk about why you are personally invested in this cause. If you have some time, please also call House Appropriations Committee Members and House Health Committee Members.

Thank you for supporting one another at this critical time.

Clarification from CDC on Case Confirmation

So that we can make sure that the magnitude and severity of AFM is truly understood, we must ensure that all cases of AFM are reported to Center for Disease Control (CDC).

Currently, here’s how a suspected AFM case is reported to the CDC: Physicians are encouraged (but unfortunately, not required) to report cases to their local health departments. These health departments report to the CDC, and the CDC classifies the case as either fitting criteria for AFM, or not fitting criteria for AFM. After the CDC classifies the case, local health departments relay the case status to the physician, who in turn, alerts the family. This is a lengthy process with many levels. We encourage parents to reach out to their local health departments to find out the status of their child’s case, if they haven’t received an update in a timely manner.

In some cases, parents have felt understandably frustrated when a doctor diagnoses their child with AFM, but the CDC classifies the child as “not AFM.” We reached out to the CDC to better understand how they decide to define a specific case as AFM or not. The CDC’s response is as follows:

CDC has case definitions for AFM with specific criteria that we use to classify patients as having a confirmed or probable case of this illness. If a patient does not meet these criteria, they are classified as “not a case” of AFM.  Our AFM case definitions provide a set of consistent criteria to help us define and learn more about this rare condition, and they are the basis for our AFM surveillance. A case classification by CDC is not meant to override a doctor’s diagnosis of a patient’s illness, or his or her treatment and rehabilitation plan. Even though some patients may not meet our case definitions, they are still counted in our AFM surveillance and help us understand the full spectrum of illness. We continue to evaluate our case definitions as we learn more about AFM.

Generally for disease surveillance, the primary goal is to better understand how often a disease occurs and how it affects a population. For our AFM surveillance, we have the additional challenge of trying to figure out what is causing this condition. In order to do this, we need to make sure our case definitions are ruling out other similar conditions, such as transverse myelitis and Guillain–Barré syndrome. This helps us make sure that we are comparing the patients with the most similar illness for risk factors and possible causes, which gives us the best chance of understanding this condition.

I personally was frustrated when I found out that my son’s case from 2016 was not counted as AFM by the CDC. When we reached out, we realized that they didn’t have the MRI showing the inflammation to the grey matter-- a previous MRI was sent that had been read as normal. The CDC isare currently in the process of updating my son’s case.

We encourage parents to reach out in an attempt to determine their child’s case status. Our goal is for the CDC (and other researchers) to have as much information as possible about all cases of AFM in order to improve diagnosis, treatment and prevention in the future.

AFM parents after presenting to the AFM Task Force about their experience with AFM.

AFM Parents Spread Awareness on Dr. Oz

On January 21st, AFM families partnered with the Dr. Oz show in raising awareness on a national level about Acute Flaccid Myelitis. We were so grateful for the opportunity to raise awareness and provide education to the general public.

Watch a portion of the episode here.

Local parents sat on a panel to talk with Dr. Oz’s medical expert, Dr. Lipkin, and were able to ask about his opinion on AFM research.

Four AFM moms shared their childrens’ stories via video conference.

The highlight was certainly two AFM moms (and AFM Association board members!) telling their childrens’ stories in an interview segment with Dr. Oz.

The show highlighted parents’ personal experiences and frustrations with diagnosis and treatment. We were glad to see the Dr. Oz team choose to highlight children who had been severely affected so that parents watching will see how devastating AFM can become. The show highlighted the immediate onset of symptoms and detrimental effects of the condition, while recognizing that a cause has not been scientifically proven and that, at this point in time, there is not a prevention or cure. We’re excited to continue our relationship with Dr. Oz and continue to educate and raise awareness about AFM.

AFM Parents Meet with CDC Task Force

On December 4, 2019, the Center for Disease Control and Prevention held their first meeting of the Acute Flaccid Myelitis Task Force. As a result of our advocacy in Washington DC, three parents were invited to present their personal journeys with AFM. It was such an honor to be invited to present--and we were so grateful for the opportunity to share our stories on behalf of all the children with AFM. Each parent shared their personal stories for roughly ten minutes.

The Task Force is made up of the experts in the field who are diagnosing and treating AFM and doing extremely important work--as well as the experts within CDC, many of whom have not ever seen a case of AFM, since they primarily work with the data. Each parent highlighted different areas within our presentations and effectively setting the tone for the meeting. Afterwards, many of the members of the Task Force came to thank us and were still visibly moved by our words--especially by Robin Robert’s. Her story of losing Carter is especially moving and powerful. Robin’s poise and commitment to fighting for Carter, even though he’s gone, is a testament to her strength.

We also had the opportunity to sit down with a TIME reporter for a little over an hour and shared more about our experiences with AFM. Before the Task Force meeting, we had breakfast with Dr. Nancy Messonnier (Director of the National Center for Immunization and Respiratory Diseases) and a dozen other CDC experts and shared some of our concerns regarding the handling of AFM (primarily, the issues with reporting and physician/public education.)

We left feeling positive and encouraged about the work the CDC is doing for AFM and excited about our future involvement. They were right with us--we all agreed that there are major issues with the data CDC receives from the states and that educating the general public as well of physicians is critical before we hit another outbreak in 2020. We look forward to following the good work the AFM Task Force is doing to educate physicians, identify causes and effective treatment and find potential prevention methods.

AFM Parents Advocate in D.C.

In the second week in November, members of the Acute Flaccid Myelitis Association and other AFM families from across the country converged on Washington DC to advocate for children affected by AFM. Parents met with legislators and were able to share their concerns about AFM. They presented on the need to make AFM nationally notifiable, the importance of establishing a national treatment protocol, and the value of increased funding for AFM research. Important connections were made, and we look forward to continuing our advocacy and work in Washington as appropriations season draws near.

On November 13, 2018, the advocates met with Anne Schuchat, MD, the principal deputy director of the CDC. Parents were able to share their frustrations with CDC’s handling of AFM and gained insight into the work CDC is doing to learn more about AFM. This meeting set the groundwork for three of our parents presenting at the first AFM Task Force meeting in Atlanta. We are optimistic and encouraged that CDC is taking AFM seriously and will be prepared to address and prevent the impending outbreak in fall of 2020.