February 29, 2016 (today!) is Rare Disease Day. The purpose of the day is to raise awareness for patients, families, and carers around the world that are affected by rare diseases.
I've always been pretty healthy and had never experienced a doctor's visit in which the physician didn't know what to diagnose. Normally it was doctor's visit, antibiotics, rest, and back to normal. I had read online about some medical cases in which patients visited doctors trying to figure out what was wrong with them, but I didn't think that was actually something with which I would end up struggling.
In March 2013, mere days after I moved back to Texas from Los Angeles, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just pulled all the noise and feeling out of my right ear in one swift moment. I panicked for a few moments, and then figured it was probably just allergies or something similar so I decided to watch it and go on with my daily routine.
I wish I had taken it more seriously in that moment. I wish someone would have told me that the first few hours after it happens are the most important in reversing damage.
Today, almost three years later, I am still almost completely deaf on one side. And we're still not exactly sure why.
Shortly after I lost my hearing, I visited my first of many ear doctors and learned that bedside manner is incredibly important. I was terrified after being told right off the bat that I may have a brain tumor and needed to have an MRI done immediately. When that came back negative, I was tested for various infections and given steroids and antivirals. The steroids made my face swell and my skin break out, the antivirals gave me a rash on my hands. But nothing helped my hearing. I was next put on a neurotonin that made my hair fall out in chunks. I was scared to wash my hair because of how fast I was losing it. And through all of this, I was visiting the medical center on an almost weekly basis, getting hearing tests done and trying to figure out what had happened to me. There was a little improvement at first, and then a decline, and then the results remained stagnant.
I was diagnosed with Sudden Sensorineural Hearing Loss (SSHL), also known as sudden deafness. By definition, SSHL is an unexplained rapid loss of hearing. As in no one has any idea why this happened to me or the small number of other people it affects on a yearly basis. Of all of the people who lose their hearing, even temporarily, which is not uncommon, only 10% of that number are able to pinpoint exactly why the hearing loss happened to them.
At this point, I've tried pretty much every form of medication and natural remedies, have visited both an acupuncturist and a medicinal doctor, and have done a lot of praying. The problem is that because of the damage, I'm unable to discern most consonants, so a traditional hearing aid isn't really even an option. From what I've seen with available surgery, I'm not ready to commit out of fear and also hope that a better surgery will one day become available. And as some of the sound in my ear has gradually come back, I'm learning how to live with it. I try to avoid really noisy restaurants and you'll usually find that I'll sit on your right side. The phone is the worst part, so I usually just have it on speaker.
Most people who know me probably don't even know this happened. I always try to play it off lightly when I meet new people ("Just in case you talk to me and it seems like I'm ignoring you, I'm not! I'm just deaf!"). But on Rare Disease Day, I want to take the opportunity to urge ANYONE who suffers from hearing loss, especially sudden hearing loss, to get it checked out immediately. Don't wait until the next day -- visit a doctor IMMEDIATELY. Your chance of recovery is much greater if you treat the problem right away.
You never realize how blessed you are to wake up and hear out of both ears until you suddenly can't hear out of one, or both, of them anymore. So please, I implore you, if you happen to be one of the few people this affects -- or if you hear that someone you know is experiencing it -- go get it checked out immediately.
I've always been pretty healthy and had never experienced a doctor's visit in which the physician didn't know what to diagnose. Normally it was doctor's visit, antibiotics, rest, and back to normal. I had read online about some medical cases in which patients visited doctors trying to figure out what was wrong with them, but I didn't think that was actually something with which I would end up struggling.
In March 2013, mere days after I moved back to Texas from Los Angeles, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just pulled all the noise and feeling out of my right ear in one swift moment. I panicked for a few moments, and then figured it was probably just allergies or something similar so I decided to watch it and go on with my daily routine.
I wish I had taken it more seriously in that moment. I wish someone would have told me that the first few hours after it happens are the most important in reversing damage.
Today, almost three years later, I am still almost completely deaf on one side. And we're still not exactly sure why.
Shortly after I lost my hearing, I visited my first of many ear doctors and learned that bedside manner is incredibly important. I was terrified after being told right off the bat that I may have a brain tumor and needed to have an MRI done immediately. When that came back negative, I was tested for various infections and given steroids and antivirals. The steroids made my face swell and my skin break out, the antivirals gave me a rash on my hands. But nothing helped my hearing. I was next put on a neurotonin that made my hair fall out in chunks. I was scared to wash my hair because of how fast I was losing it. And through all of this, I was visiting the medical center on an almost weekly basis, getting hearing tests done and trying to figure out what had happened to me. There was a little improvement at first, and then a decline, and then the results remained stagnant.
I was diagnosed with Sudden Sensorineural Hearing Loss (SSHL), also known as sudden deafness. By definition, SSHL is an unexplained rapid loss of hearing. As in no one has any idea why this happened to me or the small number of other people it affects on a yearly basis. Of all of the people who lose their hearing, even temporarily, which is not uncommon, only 10% of that number are able to pinpoint exactly why the hearing loss happened to them.
At this point, I've tried pretty much every form of medication and natural remedies, have visited both an acupuncturist and a medicinal doctor, and have done a lot of praying. The problem is that because of the damage, I'm unable to discern most consonants, so a traditional hearing aid isn't really even an option. From what I've seen with available surgery, I'm not ready to commit out of fear and also hope that a better surgery will one day become available. And as some of the sound in my ear has gradually come back, I'm learning how to live with it. I try to avoid really noisy restaurants and you'll usually find that I'll sit on your right side. The phone is the worst part, so I usually just have it on speaker.
Most people who know me probably don't even know this happened. I always try to play it off lightly when I meet new people ("Just in case you talk to me and it seems like I'm ignoring you, I'm not! I'm just deaf!"). But on Rare Disease Day, I want to take the opportunity to urge ANYONE who suffers from hearing loss, especially sudden hearing loss, to get it checked out immediately. Don't wait until the next day -- visit a doctor IMMEDIATELY. Your chance of recovery is much greater if you treat the problem right away.
You never realize how blessed you are to wake up and hear out of both ears until you suddenly can't hear out of one, or both, of them anymore. So please, I implore you, if you happen to be one of the few people this affects -- or if you hear that someone you know is experiencing it -- go get it checked out immediately.