The steady beep of my heart rate monitor won’t let me sleep. It’s 3 am and I’m on my dad’s phone playing Minion Rush because I’ve beaten every other game I downloaded. I’m just about to reach the maximum level, and just then the app announces the achievement of “500 hours played.” My eyes hurt, and I put the phone down next to me. On my right, both my parents are asleep on the peeling rubber hospital couch. I hear a large “BANG” and the door is violently pushed open by three doctors and what seems to be a young trainee taking notes. It’s time for my next session. My parents groggily get up and wheel me down the claustrophobic hallway decorated with childrens’ painted handprints.. The staff must have thought that it would be fun to let the kids with lymphoma paint, but it has the opposite effect. Their handprints, like ghosts on the wall, remind me constantly of their death.
I am wheeled into a small room that is reminiscent of any room in a children’s hospital: small drawings of animals permeate the walls, and an anatomy poster of a skinless human hangs next to a mirror. The doctors whisper inaudibly to my parents who in return give them a sigh and a heavy nod. My stomach plummets a hundred feet and my heart monitor starts to beep twice as fast as before. The doctor closest to me slips a sleek mask onto my face, and says, “Just breathe normally, everything will be OK.” I look at my mom and she nods, her face forming into a mask of sadness. My breaths are slow and steady, and I see a doctor on my right fiddling with buttons on the stand that control my mask. All of a sudden, I am drowning. My lungs shrink to the size of a paper clip, and my chest convulses rapidly. I try to scream and remove the mask, but my little hands can’t find the knot tying the mask to my face. To my left, the trainee busily jots down notes while my parents and the doctors watch in silence.
The doctors told me I was one of the first 100 patients to ever have Acute Flaccid Myelitis. When I was diagnosed in 2014, the virus was so new that the doctors did not administer any treatment other than an IV during the first two weeks after the virus took hold, simply because they had no idea how to approach treatment. I sometimes think about how my life would have changed if I had gotten the virus just a year later, when doctors would have known how to tackle it. Yet even now, nine years later, no one has made any progress on the issue of AFM. Doctors have no idea how the virus spreads, no idea about how to prevent the virus from disabling parts of the body, and no idea about how to develop a vaccine. The only thing the CDC seems to know is that “AFM patients had antibodies against enteroviruses in their spinal fluid more often than those without AFM,” which is quite obvious considering AFM attacks motor neurons in the spinal cord. What is more concerning is the fact that AFM cases are not even reported to the CDC, so “there is no specific treatment for AFM, but a clinician who specializes in diseases like AFM may recommend certain interventions on a case-by-case basis.” What this means is that the CDC gives no guidelines for how to treat AFM, so treatment is essentially up to the clinician who handles the case. According to the Cleveland Clinic, there have been several successful treatments of AFM, but since the cases are not submitted, the CDC has no idea what works and what doesn’t.
Last month, there was an AFM information session with the SRNA (Siegel Rare Neuroimmune Association), where I saw the faces of hundreds of parents hoping for a piece of information that could ease their children's suffering. Prior to the meeting, I and the families of several children who made a full recovery sent a full list of our treatments, including stem cells and corticosteroid treatments administered shortly after the onset of the virus. However, the information presented was the same as seven years ago, with the same elderly doctor droning on about MRI’s and the importance of catching the virus early. The treatments that I had received, including stem cell treatment, are not legal in the United States thanks to the CDC. I went to Panama shortly after I was discharged from the hospital, where stem cells were administered to me. To this day, the few children who were able to recover from AFM credit our recovery to corticosteroid treatment. However, the CDC states that “there is no indication that corticosteroids should be either preferred or avoided in the treatment of AFM.” Instead of taking into account the human experiences of those who have been able to make a recovery from AFM, the CDC places trust only in clinical trials, yet the sample size of children with AFM is so small that there aren't enough children to do a clinical trial. All the children martyred during the early stages of AFM who received experimental treatment suffered for nothing, as the data gleaned from their treatment lies buried in an archive never to be seen again. Why do parents have to ask Facebook forums what treatment is best for AFM? Why can’t government agencies dedicated to stopping the spread of viruses, like the CDC, provide accurate and up to date treatments?
The lack of CDC guidelines and information regarding rare neurological diseases isn’t exclusive to AFM. According to the ALS development institute, cases of ALS are also not reported to the CDC. The CDC is supposed to have a registry with the demographics of people affected by ALS, yet there is a severe undercount of patients because cases are not required to be reported. The cases that are reported come from wealthier hospitals, thus leading to an incorrect belief that primarily elderly white males are afflicted by ALS. As a result, if a female person of color shows clear signs of ALS, doctors will be extremely hesitant to diagnose her because they do not fit in the “correct demographic.” Similarly, the CDC states that men older than 50 primarily develop Guillain-Barre Syndrome, yet since cases are not required to be reported the CDC only has statistics of wealthy, elderly white males to base their studies on. This lack of information shrouding rare neurological diseases severely impacts the diagnosis of those diseases. The CDC could address this shortcoming by requiring all cases of rare diseases to be reported, yet they don’t, limiting the possibility of successful treatment.
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