Hyperacusis (sound sensitivity) is the opposite of hearing loss. For some, everyday sounds of low-to-moderate intensity are described as unbearably loud or painful, resulting in difficulty hearing, thinking, communicating and can lead to avoidance, depression and isolation. The most common cause is exposure to loud sounds. Although it affects millions of Americans to varying degrees, many people mistakenly think it is “rare.” Unfortunately, that connotation only makes it more difficult to address on many levels, including prevention.
Why is this relevant?
As a society we strive to address all types of conditions, rare and otherwise. The ADA and related laws prohibit discrimination against all disabilities, regardless of prevalence.
However, it is a simple fact of life that society cannot adequately fund education, research, care, treatments and accommodations for every condition, and therefore more resources and attention are directed at more common conditions. Private entities, educational institutions, non-profits and administrative, legislative and judicial branches of government make these difficult decisions every day. Furthermore, regardless of law or policy, people have biases, both explicit and implicit.
Ableism is the “assumption that disabled people have less value in society.” That “leads to bias, prejudice and discrimination, often preventing those with disabilities from reaching their full potential.” The National Institutes of Health determined ableism creates a “combination of discrimination and social prejudice” that can result in “inaccessible medical offices and equipment, biased medical decision-making, limited services, less aggressive treatment, and refusal of certain types of care.”
A Harvard Gazette article notes disability bias has only shifted 3% over a 14 year period. This lack of understanding can lead to dismissive comments, invalidation of patients’ experiences, refusal to make simple accommodations, and retaliation on social media. All those problems are amplified when conditions labeled as “rare.”
What is a rare disorder?
The National Organization for Rare Disorders (“NORD”) states “a rare disorder is a condition that affects fewer than 200,000 Americans.” The Genetic and Rare Disease Information Center of the National Institutes of Health (“GARD”) uses the same definition. Based on current census estimates that translates to .06% of the US population.
How many people have hyperacusis?
Over the last 20 years there have been a number of prevalence studies reported in reputable science journals conducted by experienced professionals. A 2002 Study concluded “that hyperacusis is a common problem.” In 2014 the CDC estimated 5.9% of Americans have sensitivity to everyday sounds. A more recent 2016 Noise and Health Journal article reviewed several studies including a Swedish study (8.6%), a Polish study (15.2%), a Norwegian study (11.7%) and a Swedish study of adolescents (17.1%).
Not surprisingly, different questionnaires and population samples can cause discrepancies. A 2022 Journal of the Acoustical Society of America article that reviewed several years of data from multiple sources suggests a range of 8-15%. Even at the lowest estimate of 5.9%, it still translates into over 20 Million Americans with some level of hyperacusis.
Furthermore, neither hyperacusis, nor its cousins misphonia and phonophobia, are listed on either of the NORD or GARD databases of rare disorders. Nevertheless, a large number social media “medical” sites such as WebMD, Medical News Today, and Google AI all mistakenly claim, without citation, that hyperacusis is a rare disorder that affects about 1 in 50,000 people (.002% of the population or about 7,000 Americans).
Hyperacusis has been mischaracterized as rare and that hampers not only research and care but also awareness, understanding, acceptance, accommodations and prevention. It’s very difficult to correct rampant misinformation on social media and AI. It’s incumbent on all of us in the hearing health arena to address misinformation with scientific data and research from reputable sources.
Conclusion
There currently is no cure for hyperacusis. There are possible treatments to alleviate symptoms, but many of those also have the potential risk of exacerbating the condition. One should first discuss any possible treatments with hearing health professionals. In addition, there are no/low cost options that both benefit the public health and make it easier for hyperacutes to participate in society. My Turn Up the Quiet TM initiative advocates options like turning down the volume, or adding sound adsorption, that will also help reduce the number of Americans who will become disabled from our everyday noisy world.
Copyright John Drinkwater 2024 All Rights Reserved Turn Up the Quiet TM
Disclaimer: This content is provided for general informational purposes only, and may not reflect the current law in all jurisdictions. No information contained in this post should be construed as legal advice nor is it intended to be a substitute for legal counsel on any subject matter. Readers should consult their own advisor for legal or other advice.