ORLANDO, Fla. – In recent months there has been increasing curiosity about the mysterious myelite of mystery disease, commonly known…
ORLANDO, Fla. – In recent months there has been increasing curiosity about the mysterious myelite of mystery disease, commonly known as AFM. It is a polio-like disease which, according to Centers for Disease Control and Prevention, causes weakness or loss of use of a limb.
Specifically, AFM affects an area of the spinal cord called gray matter. When gray matter is affected, a patient may experience muscle weakness, partial or total paralysis, difficulty swallowing, and even breathing failure. And even though AFM mainly affects infants, people of all ages have been reported with the disease.
AFM is nothing new. CDC has followed the disease since 201
4. However, after a boom in reported cases such as summer and again two years later, attention focused on AFM was relatively sparse – so far.
On October 9, the CDC’s AFM Monitoring Page noted that federal health care associations in the first 10 months of 2018 had been aware of 38 confirmed cases of AFM in 16 states. Quick-rolling only one week to October 16 and CDC reported that there were 62 confirmed cases for 2018 spreading over 22 states with 127 other cases being investigated, leading us to today.
New surveillance page October 23 said the 127 unconfirmed reports now were up to 155. Health officials have said that the latest numbers have affected them.
AFM is something of a mystery. Doctors are not sure what exactly triggers it and researchers have not found a prevention or remedy.
As part of Kirstin O’Connor’s story this week at AFM, News 6 sat down with Dr. Ronald Davis, owner of the Pediatric Neurology and Epilepsy Center in Central Florida and assistant physician for epilepsy surgery at Arnold Palmer Hospital. Below is a partially edited transcript of our interview with Dr. Davis.
For many of our viewers, AFM is something they have never heard of. Can you summarize what it is?
Dr. Davis: This is a disorder that appears to be polio-like and affects the spinal cord and nerve connectivity for extremities in a way that causes quite deep paralysis.
What do we know about AFM? It’s not new but many people are watching this report, to them it will be new.
Dr. Davis: Fortunately, there are not so many cases; It’s not new. It has been reported worldwide and we will grasp it in recent years. We believe it is a direct effect of an infection related to a viral disease, especially either enterovirus or an autoimmune response related to the infection: body to body.
AFM has been described as a polio-like virus. And because of that, some parents require a new vaccine. Do we need to modify the polio vaccine? Do we need to add a new one or are we not really sure?
We are not sure. I think we must first find out exactly what the cause is. Vaccines can theoretically be of great help, just as it has been for polio. If we could isolate any virus or autoimmune response caused by the virus and then develop a vaccine, it would be wonderful. It may be where we must go when it comes to our next major intervention to try to eliminate or eradicate this disease.
How do you treat AFM?
Dr. Davis: It has been very difficult and very unsatisfactory, both as caregiver and parent. Things have been tested as IVIg, which is gamma globulin plasma freezer where we remove the blood, tried to clean up the immune conditions, place it back and steroids. So far, it has not been a very good opportunity to see the completely reverse effect of AFM. We are still looking for a good treatment modality.
One of the mothers (we interviewed) described AFM as a strain of the poliovirus, she thinks they need to make a new vaccine for the tribe. Is there anything that is possible or you do not know what you’re dealing with yet? Is it too early?
Dr. Davis: It’s a bit early. The tank process is that it is related to a certain enterovirus and polio is part of these enterovirus class, but we are not really sure about which strain. You would not be able to shoot a virus right now and hope for high efficiency.
Up to what age have people reported to have AFM?
Dr. Davis: You know, in other countries it’s actually also reported to adulthood.
Who is most exposed to AFM? If there was a target age group for parents to be very aware, what would it be?
Dr. Davis: It seems somewhere between 2 and 6.
What is the odds that a child will receive AFM? It’s not common, right?
Dr. Davis: No, it’s very, very rare, less than one in a million, I think.
Some say that this is just one of the side effects of the entire non-vaccination movement for children who do not want to vaccinate. True or false?
Dr. Davis: I think it’s wrong. It is still very important to vaccinate your children for other reasons obviously. Keep in mind that vaccines were developed to keep people from getting these serious illnesses that cause death. But in this special disease, AFM, children who have both vaccinated and unvaccinated have proven to have this.
Are there any genetic links?
Dr. Davis: There are no genetic links now. There is a thought process that in those who can have an autoimmune response from a genetic aspect that they may be more prone to the occurrence, but not a clear genetic link.
This is a scary thing for the parents. What should they look for in their children’s behavior or what happens to their children to see if it is possible that the child may have AFM?
Dr. Davis: Sometimes there can be no warning signs. The typical presentation can be just a cold, and then you think you’re recovered. As for a patient we were not long ago, they woke up and they got paralyzed. There was not much warning and that’s the real scary part. We still need to vaccinate our children properly, take care of all our common health needs and know even simple things like hand washing, to try to prevent colds and flushing in the first place.
Is it contagious?
Dr. Davis: Not as far as we can tell exactly. Again, you get a disease like colds. That part can be contagious and that’s where proper hand washing is important. But then it seems to be after you recover from the acute phase of a cold or flu is when the symptoms begin to come out. Then again, the thought process is that it is an autoimmune-type reaction that is related to the initial disease. There is still a lot for us to discover.
How frustrating is this for you?
Dr. Davis: Much. Because you do not like seeing you can not fix this little girl or the little boy’s paralysis of the leg. One day they were normal and the next day they could not go. We do not want such a thing to happen in the first place, but when you can not fix it, it just makes it so much harder. Awareness and knowledge is very important when we try to develop not only recognition without treatment and vaccination.
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