Hyperacusis and Rare Disease Day: the Need for Awareness and Change

by | Feb 28, 2023 | Awareness | 1 comment

By J. D. Rider

Today is Rare Disease Day, an annual date which strives to shift our focus toward the 7,000 rare diseases that plague this world. Sadly, 90% of them have no FDA-approved treatments or cures. Hyperacusis and its subsets, like noxacusis, are among them. Studies have indicated that only 1 in 50,000 people will ever get hyperacusis, which is 20 people for every million, and it’s widely believed that only a handful of those people will ever reach a severe stage. So the milder incarnations of the ailment go unnoticed as people try to adapt to a life that’s significantly affected, but still intact somewhat, and the more severe cases are lost in the haystack since they’re such a small group. And those folks are often forever house-bound and unable to lead fulfilling lives in any way, shape, or form.

Extreme hyperacusis is one of the most debilitating, life-limiting ailments out there. It takes the beauty of this earth and turns it on its head. Imagine a world where every sound—big and small—causes endless pain, and exposures to normal noises worsen you permanently. Some research has indicated there’s tiny nerves in the ears responsible for this catastrophe. So when those nerves get damaged, due to ototoxicity or continued sound abuse, the auditory system can no longer handle the soundscape of this planet. It triggers constant pain in response to sounds and you have to isolate from them. If you don’t, your symptoms will increase more and more when you expose yourself to said noises, often permanently.

Hyperacusis tortures the sufferer, as they’re forced to hide from the conventional order of life, settling for the fate of a hermit who’s anti-social, not by choice, but by necessity. Remember how people were profoundly affected by the COVID-19 lockdown, when they had to stay at home? The isolation drove people wild. Well, imagine those emotional trials with the full weight of sound torture piled on top. Those who have these conditions face a lifetime of that, a fate of entrapment, not just 18 months, like COVID. With these conditions, the whole situation sounds insane or absurd, honestly; you’d think it was the concoction of a horror novelist, but unfortunately it’s a grim reality that’s so rare that many have never heard of it. And it will never kill the sufferers. It’s not terminal, though it’s often terminal for their quality of life since no treatments are available. Their destinies lie in seclusion: hiding forevermore. And that horrifying truth sometimes leads a sufferer to commit suicide.

The likelihood of facing hyperacusis is infinitesimally small in the big scheme of things, which is good news for humanity, but doesn’t help the awareness cause and doesn’t push the general public to feel there’s a need for change. The reality of that is troubling: those people are lost in the shuffle; they fall into the cracks and crevices of a broken system that doesn’t even realize it’s broken most of the time, as even the medical community is frequently unaware of hyperacusis in large part.

There’s only a small faction of specialists who are privy to the knowledge of its presence. To combat these issues and the destruction hyperacusis leaves, we must turn our eyes to spreading awareness and funding to promote research and breakthroughs for treatments, and hopefully a cure someday. Hyperacusis is grossly underfunded and misunderstood. In the future, please join us in challenging these roadblocks and help us defeat the monster that is hyperacusis; to fight for these people’s lives; those lost in the crowd; gone, invisible; who dream of being seen again; included in this fragrant world.

1 Comment

  1. Biljana

    I never live my home without my noise blocking muffs for loud situations. However, even in quiet surroundings there’s always some unexpected loud sound that startles me. I am very afraid of loud sounds since I got acoustic trauma and heating damage on a concert. I refuse to stay at home (I have to work anyway) and my muffs give me freedom to go everywhere but sometimes they irritate me especially if I wear them for a longer time.


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