With hyperacusis and its subsets, what makes it even worse is knowing that only a few people for every million get it severe, and only 10 or 20 for every million get it at all. It makes you realize that it's not profitable for the world to care about. Like I've said before, there's a greater chance of someone getting struck by lightning at some point in their life than ever getting hyperacusis — 1 in 15,000 according to the National Weather Service. And hyperacusis is a handful of people for every million, much rarer. So when I think about this stuff, I sometimes wonder if our quest for change or making a difference is ever gonna work. Truth is, most people can be as reckless as they want with their ears and never get this crap; generally, they'll only get mild tinnitus or some hearing loss, which isn't that debilitating in most cases. The general public doesn't worry about lightning or thunderstorms, so why would they worry about ears, especially when the chances of catastrophe are astronomically low? The world doesn't show much compassion when it comes to disabled minorities with rare diseases. Part of that is because the conditions are rare and often invisible, and another part — which also ties into their rarity — is because there's no money to be made off them. That's the systematic flaw, where the government, big pharma, and the donors themselves don't see any benefits for them. After all, the world runs on money. It's a business. It's a scheme. But it's profoundly evil because these same governments make it next-to-impossible to get disability rights for a disease they don't believe in — or even care about — and they also won't fund the research to treat it. So what do they expect these people to do when they're facing the impossible — surviving with with a disease that makes them incompatible with life? They almost can't survive. I think our best hope is if they somehow find a treatment or cure for tinnitus, which is a way more common ailment (though in a mild form usually), and if so, it might also help hyperacusis since they're closely linked.
But in the meantime, when trying to crack the mysteries of hyperacusis (for the few researchers there are in the world, which you can almost count on 1 or 2 hands), this is something the community needs to focus on more: the fact that it's infinitesimally rare. Like it or not, if you're looking at hyperacusis as an exposure-based illness, the reality is that those who have it are no different than anyone else; meaning, it only manifests when contact is made with the aggressors responsible. But I don't believe that. It doesn't make sense, as most people claim they didn't do anything different than their neighbor or friend. In fact, most will say that they did far less than other people they know who abuse sound or medications routinely, or way more than they ever did. The victims just got unlucky or had some preconceived genetic component which allowed hyperacusis to fester. That's something that the hyperacusis community ignores more than they should. They're always so focused on noise and medications as being the culprit, and while that's true that they do bring it on, I think they're only able to because the person had a predisposition to hyperacusis. In other words, person 1 can be as reckless as they want and never get hyperacusis, but person 2 has the gene or whatever which makes them vulnerable. They had weak ears to begin with. That can't be stated enough. And researchers need to hone-in on that as the numbers speak for themselves. Why is it that so many are way more abusive with their ears and never get this crap? Obviously, there's some genetic component at work.
This modern world with louder noise and more medications is more toxic than the century before it. Perhaps 100 years ago, we would've been okay and never got hyperacusis. But our ears couldn't handle these present day stressors because they were weak from conception. Nevertheless, a labyrinth of mysteries is unavoidable, as the researchers face financial obstacles, too. They're working with pennies on the dollar; even lower than that. That's why I always say this stuff needs huge amounts of money to truly crack; not even millions — billions. Medical breakthroughs happen when billions are thrown around. In the USA, cancer gets $26 billion a year in funding. AIDs gets $28 billion; Parkinson's $52 billion. They have decent or good treatments for those ailments already, yet they still keep funding them solely and don't focus on the ones that don't have treatments yet, that get almost no funding at all. Personally, I don't believe the world will save us from hyperacusis anytime soon. They don't care and don't need to. Hyperacusis is too rare. Those other ailments cited above are a lot more common. I know how this world works and it's not pretty. I've seen the worst of it, even before all this, in my years working in the media with NBC. But perhaps there's a chance for medication breakthroughs sooner rather than later, where the pain can be controlled or managed better, but a cure seems unlikely, as the prevalence of hyperacusis doesn't warrant the urgency to develop one. It's just the unfortunate truth.
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