What 14-year-old Cindy Redmond calls her “living nightmare” started a year ago at a friend’s kitchen table in who lives in Wilmington, Delaware.
When Cindy went over to her friend’s house for dinner, she could never imagine that a careless mistake would change her life forever. Cindy was welcomed at the dinner table in her friend’s house, and as they were waiting for food to be served, her phone rang and she answered it. She began a conversation and this ticked off her friend’s stepfather. He instructed her to hang up, she did not comply. At the second request, she did. However, the man was left annoyed that he had to ask Cindy twice to get off her phone. So he resolved to unleash an air horn into her ears.
Cindy said caused a pop in her head and excruciating pain that has lingered ever since. That careless action forever changed Cindy’s life. An air horn at close range hits 130 decibels or more — loud enough to cause auditory destruction.
Cindy was diagnosed with a rare incurable disorder called hyperacusis which causes every day sounds such as babies crying, people talking and sirens blowing to induce a burning and stabbing sensation in her ears. Cindy told her parents and teachers that she “felt “off” in English class the next day. For some reason, her teacher’s voice seemed painfully loud. Cindy went home sick.
She told People magazine:
“It felt like a giant pop in my head and ears, and from then on my ears hurt like someone was stabbing me or I’m getting burned.”
Four days later she was admitted into a nearby emergency room following her leaving school early, the pain persisted. For six months doctors said Cindy had an inner ear canal infection, prescribing her with Tylenol coated in codeine. Her mother Laurie claimed her daughter was constantly doped up and absent:
“It helped Cindy’s pain but it made her a zombie.”
They sought help from a wide range of doctors including hearing disorder specialists, occupational therapists, neurologists, rheumatologists, psychologist, ENTs, audiologist and allergists. It wasn’t until an occupational therapist, who had previously learned about hyperacusis, recognized the case and diagnosed Cindy with Hyperacusis.
According to the American Academy of Otolaryngology-Head and Neck Surgery:
Hyperacusis is an extremely rare disorder with little research, that causes super-sensitivity and pain to certain ranges of sounds. The exact reason it occurs it unknown, but it may be caused when nerves in the ear that are used to regulate hearing become damaged. Sufferers become extremely sensitive to sounds. Noise that is normal to most people can seem unusually loud and even painful.
It can also cause a sense of vertigo or falling, as well as associated anxiety and panic attacks. Damage to the ear or brain is believed to be a primary cause, through a series of factors including impact, Lyme disease and toxic damage to the ear. It may also be caused by overexposure to loud music and some neurological illnesses. There are no surgical treatments, but sound therapy using white and pink noise can slowly improve tolerance to sound for some people.
The Redmond’s said the man who blew the air horn in Cindy’s face has never apologized, but the two have tried to find forgiveness and have decided to not seek legal action. The Redmonds claim this is mostly due to the fact the stepfather has a family of six to support. Cindy described how angry she was at him:
“It was a lot of anger at first and then turned into sadness realizing that my entire world had crumbled.”
She has lost friends who think she has made up her condition and her friend’s stepfather doesn’t allow the girls to see each other anymore, though they still communicate online at times. Cindy said her dad’s side of the family is very big and loud so she has had to miss holidays and hasn’t seem many of them for nearly a year.
The noise-sensitivity she experiences has turned her home into a sanctuary as the safest and quietest place she knows, according to her mother Laurie. Both of them have had to adjust massively to allow Cindy to go about her days. This includes having to plan their outings for times that they think are the least populated. Laurie described how difficult it was to celebrate her birthday:
“For her 14th birthday she wanted to go to the aquarium. Twenty minutes in she was sobbing from the pain.”
Their home, which doubles as Cindy’s school, has red flags including the ice-maker, their dog’s bark, the garage door and outside noise from sirens. Laurie worries that her daughter won’t be able to live a normal life due to her inability to be around people. Laurie has to constantly avoid other babies or children who don’t have control over their voice volume.
Last year, a breakthrough in research found that nerve fibers in the ear whose functions were previously unknown, were actually pain receptors. Before this discovery, researchers looked at the brain and middle ear to explain sound-induced pain. But studies from Northwestern University and John Hopkins have shown pain receptor-like behavior from nerves connected to outer hair cells, which are the most susceptible to sound-induced damage.
There is no surgical cure but doctors have told Cindy the best treatment is to be exposed to sound 100 percent of the time. She wears a special earpiece resembling a hearing aide that produces white and pink noise as a form of sound therapy, but so far has not seen results. Cindy has been unable to return to school; she can’t go to the store; for all intents and purposes she is missing out on being a kid due to some dumb prank a parent deemed worthy at the time.
Cindy took matters into her own hands, and she is now raising funds for the nonprofit Hyperacusis Research, which supports scientific research into noise-induced pain. Cindy’s page, at Cure4Cindy.org, notes that an acoustic injury can result from one loud burst of noise or from cumulative exposure over time, which includes loud music and concerts. She also has her own YouTube channel where she educates those willing to learn, what it’s like for her.
Cindy described the pain she lives with everyday:
“Having hyperacusis is like walking into a bear’s cave. You don’t know what noise is coming your way next. It’s a living nightmare.”
Bryan Pollard, president of Hyperacusis Research, founded the non-profit organization after he was diagnosed with hyperacusis due to sound trauma from a wood chipper eight years ago. He realized how poorly-researched this was and works with scientists from around the world for a cure. Right now he estimates 12 to 15 studies are being conducted worldwide examining the the condition’s cause and possibilities of a cure. But his is nothing compared to Cindy’s pain. Bryan is affected less in one ear than the other and able to continue daily life.
He told People:
“People are unaware of the enormous destructive power of sound.”
Cindy should have started 9th grade at Brandywine High School last fall. Her mom said she wasn’t sure if it would be possible but it couldn’t hurt to try. In the end, there was not much the school could do… Laurie said it breaks her heart having to confine her daughter to her house:
“The school couldn’t make accommodations to soundproof her academic world. She loved to be around other people and loved to be social.”
Instead, when Cindy’s pain is manageable, she goes once a week to a special school with no shrill bells, no slamming lockers and just a few other kids. But other than that she rarely leaves her home. Even watching television — with its unpredictable volume — is tough on her ears.
M. Charles Liberman, an otology professor at Harvard Medical School, who heads a hearing lab at the Massachusetts Eye and Ear Infirmary, explained:
“Overexposure to sound does not always lead to conventional hearing loss. It’s a sensation that most of us have rarely, if ever, experienced.”
According to the latest research, one culprit may be pain-sensing nerve fibers deep within the inner ear. When the noise stops, the pain continues, lingering or even worsening. Confusingly, most audiology tests appear normal. The family is raising money for the continued research of this rare disease, even though financially, they are also pulling at strings.
Cindy’s mother, laid off from a job in the mortgage field, is currently working retail, with a flexible schedule that lets her spend more time with Cindy. Laurie is scared for the coming crucial years for her daughter to develop into a social, healthy, and active teenager:
“I used to worry that Cindy had the right friends and was taking the right classes to get into college. Now I worry that she has no friends. I don’t know how she’s going to finish high school. I have no idea what her future holds. Hyperacusis needs attention. We need a cure so Cindy can live a normal teenager’s life.”
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