Hearing Loss Film “Hearing Hope” Captures Personal Strength, Scientific Vision

Hearing Health Foundation (HHF) has created a new short film, “Hearing Hope,” to expand awareness of hearing health through the voices of those who benefit from and those who carry out the foundation’s life-changing work.

"It took me longer to talk than most kids. Because I couldn't understand what they were saying so I couldn't copy it," explains Emmy, 7.

The third most prevalent chronic physical condition in the U.S., hearing loss can affect anyone—from first-grader Emmy to retired U.S. Army Colonel John—but its reach is often underestimated. “It’s one of the most common sensory deficits in humans,” explains cochlear implant surgeon Dr. Anil Lalwani. “I think we have to go from it being hidden to being visible.”

Both a hearing aid user and cochlear implant recipient, seventh-grader Alex is doing his part to make hearing loss less hidden. Smiling, he says he wants people to know that hearing with his devices makes him happy. John wishes to be an advocate for veterans and all who live with hearing loss and tinnitus.

When she received her hearing loss diagnosis at 17, NASA engineer Renee never thought she'd be living her dream.

The film also highlights resilience in response to the challenges associated with hearing conditions. Video participant Renee saw her dream of becoming an astronaut halted at 17 when her hearing loss was detected. Now she helps send people to space as an engineer at NASA.

Sophia describes the “low, low rock bottom” she hit when she was diagnosed with Usher Syndrome, the leading cause of deafblindness. Yet she feels special knowing her disability shapes her and sets her apart.

Jason recounts having no resources for hearing loss in children when his son, Ethan, failed his newborn hearing screening. Today he’s grateful for Ethan’s aptitude for language, made possible through his early hearing loss intervention.

With the support of HHF, more progress is made each year. “I’m glad that the doctors are trying to figure out how fish and birds can restore their hearing,” says Emmy.

For the past 60 years, HHF has funded promising hearing science and in 2011 established the Hearing Restoration Project (HRP), an international consortium dedicated to finding biological cures for hearing loss using fish, bird, and mouse models to replicate the phenomenon of hearing loss reversal in humans.

“If [the HRP] can achieve that goal of hearing restoration...that would be a marvelous thing for hearing loss,” reiterates Dr. Robert Dobie.

Through “Hearing Hope,” HHF would like to share its mission and message of hope to as many individuals as possible and reassure those with hearing loss and their loved ones they are not alone. As an organization that channels all efforts into research and education, HHF would greatly appreciate any assistance or suggestions to increase visibility of the film.

Watch the full film at www.hhf.org/video. Closed captioning is available.

The Listening Project

By Vicky Chan and Lauren McGrath

“Most people still assume that if a person is deaf, they’re not able to speak,” narrates Jane Madell, Ph.D., in the opening moments of her documentary film “The Listening Project,” released in March 2018. Her statement sets the tone for the following 38 minutes of personal stories that shatter stigmas about hearing loss.

A New York City-based pediatric audiologist, speech language pathologist, and auditory verbal therapist, Madell created the documentary with award-winning filmmaker Irene Taylor Brodsky to reveal how technology has improved communication—and life—for people with hearing loss.  

Richard, a cochlear implant recipient, is one of the participants in "The Listening Project" who works as a software engineer.

Brodsky captured interviews of 15 individuals with hearing loss, most of whom Madell treated when they were children. Madell says filming  allowed her to reconnect with her former patients to “see what they had to say about growing up with a hearing loss and what advice they might have for parents of newly identified children with hearing loss.”

The subjects of “The Listening Project” are vibrant young adults living and working all over the world—connected by their gratitude for the technologies and treatments that enable them to hear and talk. The majority are cochlear implant recipients, while the remainder wear hearing aids. They experienced similar anxieties, including not being able to hear everything in social settings, disclosing hearing loss to new acquaintances, and accepting their hearing loss.

If not for modern medical progress, the film’s subjects may not ever have been able to overcome these hurdles. When Madell began her career in audiology 45 years ago, hearing loss treatments were very restrictive. Only children with mild to moderate hearing loss could hear well with hearing aids, and the Food and Drug Administration had not yet approved cochlear implants. Such limitations challenged Madell emotionally early in her practice. Though she smiled and appeared optimistic in front of her patients and their families following a hearing loss diagnosis, she knew how hard they would need to work with inadequate accommodations for their children to succeed.

Madell’s former patients and millions of others are fortunate  changes in hearing technology and policies in recent decades have been dramatic. “We are so lucky we live now and not 30 years ago, 40 years ago,” says one. Another young man adds that the ability to communicate and feel comfortable doing so is “a core human value.” Advancements have made it possible for children with hearing loss to learn spoken language, which Madell believes is critical for educational, social, and professional development and gives them options they would not have otherwise.

Madell hopes the personal stories in “The Listening Project” will help parents of newly diagnosed children, as well as legislators, educators, and healthcare workers. “Parents of children with hearing loss have told me that if they had seen the film before the diagnosis, it would have been easier to deal with,” she says. It shows parents that with the resources and hearing technology available today, hearing and speech are possible for every child.

To learn more about the film for either personal or educational use, visit thelisteningprojectfilm.org.

Making Entertainment Relatable and Accessible for More

By C. Adrean Mejia

Films, plays, and television series have long served as platforms to create awareness of important topics that have otherwise been kept out of the spotlight. Hearing loss is one example of such a topic.

As an organization that seeks to inform the public about the prevalence, prevention, and treatment of hearing loss, Hearing Health Foundation (HHF) applauds the growing prioritization of this issue in entertainment. We are pleased to know that the number of films featuring characters with hearing loss—played by actors with hearing loss—has risen with the years, generating greater public awareness of the third most common health condition in the United States. Complementing this trend of an increased presence of hearing loss on screen is the introduction of recent legislation to make entertainment more accessible to viewers with hearing loss.

Actors and characters with hearing loss expand society’s understanding of the condition. Hearing loss empowers abilities, emotions, and experiences unlike those of people with typical hearing. Some recent works with characters with hearing loss include the following:

The Silent Child tells the story of a profoundly deaf four-year-old girl who is about to attend a mainstream school with minimal support—until a social worker teaches her American Sign Language (ASL). The film communicates the disappointing statistic that over 78% of deaf children attend mainstream school without accommodations. A final comment that states that the creators “hope this film contributes in the fight for sign language to be recognized in every school across the globe.”

Children of a Lesser God, a play written in 1979, made its Broadway debut last April. The piece focuses on the professional and romantic relationship between a deaf janitor and a typical hearing teacher and shows the contrasting worlds off sound and silence. To Sarah, the janitor, deafness is an identity, not a defect.  

This Close is a TV series by two deaf writers and actors that narrates the true story of their lives. The show provides a close look of the everyday day life of two best friends, emphasizing their challenges and frustrations while highlighting the positive and beautiful things that their hearing loss brings to their existence.

HHF commends these and the artists behind similar works for the awareness their creations have generated. Likewise, the organization is proud to witness the introduction of new laws and procedures to make entertainment more accessible to the hearing loss community.

Credit: Naugatuck Patch

The American with Disabilities Act (ADA) first broke barriers by advocating for the requirement that all video program distributors close caption their TV shows. But it wasn’t until recently, with the help of technology, that these rules have expanded. On November 2016, the Final Rule on the ADA Title III was signed, requiring all American movie theaters to provide accessibility for captions. Large cinemas now offer assistive listening, closed captions, and descriptive audio.

Broadway, too, has made tremendous improvements. In 2016, the Theater Development Fund (TDF) and The Broadway League, launched www.theatreaccess.nyc, a website with information about tickets prices, dates and accommodations for theatergoers with disabilities. In addition, TDF now provides accessibility programs with open captioning and/or ASL at select Broadway performances.

Entertainment has made progress in becoming more inclusive for people with hearing loss since the implementation of these programs, but additional work is needed. Though mandating captioning at movie theaters represents great progress, other entertainment settings, including sports arenas and concert halls, must follow suit.

To optimize the listening experience for audience members with hearing loss, more must adopt the use of hearing loops, which transmit sound from a PA system to hearing aids and cochlear implants. In December 2017, the state of Minnesota passed a bill requiring hearing loops in public meeting spaces, taking after similar New York City legislation from earlier in 2017.

HHF looks forward to a day where no one must live with hearing loss. As long as hearing remains out of reach for tens of million Americans, fair accommodations are the most ethical choice.

Let’s Make Noise Safer

By Vicky Chan

April 25 is International Noise Awareness Day, an annual, vital reminder to take a stand against noise exposure and to spread awareness about the underestimated threat of noise-induced hearing loss (NIHL). Seemingly harmless rhythms, roars, and blasts heard daily from music, trains, and machinery are, in fact, among the top offenders of NIHL.

Noise-induced hearing loss (NIHL) progressively occurs after chronic exposure to loud sounds. The frequency and intensity of the sound level, measured in decibels (dB), increases the risk of NIHL. Gradual hearing loss can result from prolonged contact with noise levels of 85 dB or greater, such as heavy city traffic. Noises of 110 dB or more, like construction (110 dB), an ambulance (120dB), or the pop of firecrackers (140-165 dB) can damage one’s hearing in a minute’s time.

NIHL is the only type of hearing loss that is completely preventable, yet billions of individuals endanger themselves daily. Over 1.1 billion young adults ages 12 to 35—an age group that frequently uses headphones to listen to music—are at risk. Already, an estimated 12.5% of young people ages of 6 to 19 have hearing loss as a result of using earbuds or headphones at a high volume. A device playing at maximum volume (105 dB) is dangerous, so exposure to sounds at 100 dB for more than 15 minutes is highly discouraged.

Most major cities around the world have transit systems that put commuters in contact with sounds at 110 dB. BBC News found that London’s transit systems can get as loud as 110 dB, which is louder than a nearby helicopter taking off. The sound levels of some stations exceed the threshold for which occupational hearing protection is legally required. New York City has one of the largest and oldest subway systems in the world where 91% of commuters exceed the recommended levels of noise exposure annually. In a study on Toronto’s subway system, 20% of intermittent bursts of impulse noises were greater than 114 dB.

People who work in certain fields are more vulnerable to NIHL than others. Professional musicians, for instance, are almost four times as likely to develop NIHL than the general public. Military personnel, who are in extremely close proximity to gunfire and blasts, are more likely to return home from combat with hearing loss and/or tinnitus than any other type of injury. And airport ground staff are surrounded by high-frequency aircraft noises at 140 dB. In all of these professions, the hazard of NIHL can be significantly mitigated with hearing protection.

NIHL is permanent. Increased exposure to excess noise destroys the sensory cells in the inner ears (hair cells), which decreases hearing capacity and leads to hearing loss. Once damaged, the sensory cells cannot be restored. To find a solution, Hearing Health Foundation’s (HHF) Hearing Restoration Project (HRP) conducts groundbreaking research on inner ear hair cell regeneration in hopes of discovering a life-changing cure.

Nearly three-quarters of those who are exposed to loud noises rarely or never use hearing protection. It is our dream that someday, NIHL will be reversible as a result of the HRP. Until then, to make noise safer, HHF advises protection by remembering to Block, Walk, and Turn. Block out noises by wearing earplugs or protective earmuffs. Walk away or limit exposure to high-levels of noises. Turn down the volume of electronic devices.

Study Suggests that Nursing Homes Ignore Residents’ Hearing Loss

By Robert Polner

Over the past decade, hearing loss has emerged as a key issue in aging and health.  The problem affects over 80% of people aged 80 and over. Hearing loss is associated with social isolation, depression, and cognitive impairment --- all problems that are common among nursing home residents.

Yet the problem of hearing loss has not received much attention in the nursing home world.

Photo Credit: Senior Guidance

“Hearing loss is often seen as an inevitable consequence of aging,” said Professor Jan Blustein, M.D., Ph.D., professor of health policy and management at New York University’s Robert F. Wagner Graduate School of Public Service, the senior author of a study published today (Jan. 30) in The BMJ. “Many people just don’t appreciate how much hearing loss disrupts understanding and communication, and what a toll that takes in the lives of vulnerable older people.”

Prior studies in single nursing homes have shown that staff are often unaware that residents are having difficulty hearing.  But Blustein and her colleagues found that this appears to be a national trend.  Using data that all US nursing homes are required to report to the federal government known as the Minimum Data Set (MDS), the researchers found that in 2016, over two-thirds (68%) of long-stay nursing home residents over the age of 70 reportedly had adequate hearing, meaning that “they had no difficulty in normal conversation, social interaction, or listening to TV.”  The researchers compared this with previously reported data on elderly people outside of nursing homes, and argue that the reported rate in nursing homes is implausibly low.

“While prior small studies have shown that nursing home staff underestimate hearing problems, the data strongly point to a national problem,” said Blustein.

According to co-author and geriatrician Joshua Chodosh, M.D. of the NYU School of Medicine, recognition and treatment of hearing loss is “low hanging fruit for those who care for elderly people. Once you’re aware that hearing loss may be a problem, there are many ways to help,” said Chodosh. “Speaking clearly and facing the person when you talk is a good way to start.  But patients should be referred to an audiologist.  If buying hearing aids is within financial reach, that may be a good step. But there are other low-cost hearing assistance solutions such as pocket amplifiers that cost about $150 that can be very helpful in communicating with older people with hearing loss.”

As Blustein notes, “Hearing loss disrupts communication, leaving those affected especially vulnerable to social isolation and depression. Nursing homes could make a big difference in residents’ lives by attending to the issue.  This would not only be good clinical practice;  it would also be compliant with the law, since the Americans with Disabilities Act requires that homes offer ‘effective communication’ with residents.”

This press release was republished with permission from NYU. View the original article here.

The Strength of Our Olympians

By Vicky Chan

The competitors in this year’s Winter Olympics are full of drive and determination. Olympians throughout history have overcome various challenges for a chance to win the gold, including hearing loss. Hearing loss has played a big role in the lives of some Olympians. In spite of their disability, or, perhaps, because of it, hard-of-hearing Olympians have thrived as athletes. Rather than viewing their hearing loss as a limitation, these Olympians—our very own Gold Medalists—have claimed that compromised hearing has shaped their work ethics and contributed to their success.

Adam Rippon

American Figure skater Adam Rippon. Credit: Jim Gensheimer/Bay Area News Group.

Adam Rippon is a figure skater participating in the 2018 Olympics. He was born with an eye infection and 80% hearing loss. Before his first birthday, he had major surgeries to correct both issues. At age 5, he survived a bursted appendix and severe respiratory condition. Despite his early health difficulties, he won a gold medal at the Four Continent Championship and the national title in 2016.

Tamika Catchings

Tamika Catchings is a retired American WNBA star who was born with hearing loss. She participated in more than 15 WNBA seasons and won four Olympic Gold Medals. Catchings has attributed her success to her hearing loss—compared to her typical-hearing opponents, she is more observant on court which allows her to react faster than they can. Catchings said, “As a young child, I remember being teased for...my big, clunky hearing aids, and the speech problems...Every day was a challenge for me...I outworked [the kids who made fun of me], plain and simple.”

Frank Bartolillo

Frank Bartolillo is an Australian fencer who competed in the 2004 Olympics. He was born with hearing loss, but Bartolillo states that his hearing loss has actually helped him improve his fencing skills by allowing him to fully focus on his opponent.

Carlo Orlandi

Carlo Orlandi was an Italian boxer. At age 18, Orlandi became the first deaf athlete to compete and win a Gold Medal in the 1928 Olympics. Later, he became a professional boxer with a career that spanned 15 years and won nearly 100 matches.

David Smith

David Smith is an American volleyball player who was born with severe hearing loss. At age three, he was fitted for hearing aids in both ears. As an athlete, he relies heavily on hand signals and lip reading to communicate with his teammates. On the court, Smith can’t wear his hearing aid, so his coach, John Speraw, uses the “David Smith Rule.” This rule mandates that “when David wants it, David takes it,'" says Speraw. "Because in the middle of a play, you can't call him off...He's mitigated any issues he has by being a great all-around volleyball player."

Chris Colwill

Chris Colwill is an American diver who was born with hearing loss. Although his hearing aid allows him to hear at an 85-90% level, he can not use it while diving and relies on the scoreboard for his cue to dive. But Colwill stated that this is an advantage for him—noise from the crowd doesn’t distract his concentration on diving.

Katherine Merry

Katherine Merry is a former English sprinter who won a Bronze Medal in the 2000 Olympics. At age 30, she developed tinnitus when a nurse made a mistake during a routine ear cleaning procedure. Ever since, she has lived with a constant high-pitch buzzing sound in her ears. It becomes worse when she is tired, overworked or on a flight. Today, Merry works as a BBC Sports Presenter.

These Olympians prove that those affected by hearing loss can pursue successful careers in sports. Refusing to let anything hold them back, they turned their disabilities into advantages in their respective competitions. Hearing loss allows them to block out distractions and focus on the sport. Their disability has shaped their determination, forcing them to become stronger and better athletes.

HHF Partner Hyperacusis Research Shares 14-Year-Old’s Heartbreaking Story to Fight Noise Intolerance

Photo Credit: Hyperacusis Research

By Lauren McGrath

Hearing Health Foundation (HHF) Emerging Research Grants (ERG) grant funder Hyperacusis Research—a nonprofit dedicated to developing effective treatments for hyperacusis and to funding research that will eliminate the underlying mechanisms that cause hyperacusis—has a new reason to fight to cure the noise intolerance disorder.

Cindy, 14 years old, has suffered from hyperacusis since she was blasted in the face with an airhorn one year ago. The blast almost immediately prompted “a burst of pain in [her] ear” that made it “feel like someone was stabbing [her].” Six months and several doctors’ visits later, an occupational therapist recognized her symptoms and diagnosed her with the disorder, which causes Cindy to experience pain at low levels of sound relative to what a person with typical hearing can withstand.

Once a happy and social eighth-grader, Cindy now rarely leaves her home. Secluded from the painful sounds of the outside world, her house has become “her sanctuary,” her mother explains. Her intolerance of everyday noises like the school cafeteria and teachers’ voices has forced her to leave public school in exchange for an isolating homeschool experience. “The thing I hate most is that I can’t see friends,” Cindy shares.

Cindy suffers from one of four hyperacusis subtypes called pain hyperacusis. The other three types, according to Hyperacusis Research, are loudness hyperacusis (which causes moderately intense sounds to be perceived as very loud), annoyance hyperacusis (which causes negative emotional reactions to sounds), and fear hyperacusis (which prompts an aversive response to sounds that causes anticipatory response and avoidance behavior). Specific medical treatments, at the moment,  do not yet exist for pain hyperacusis.

Those inspired to help Cindy can donate to Hyperacusis Research to advance the ontological knowledge of hyperacusis through research grants, including those awarded to HHF’s ERG investigators.

Since 2015, Hyperacusis Research has generously funded grants for a total of five ERG investigators focused on hyperacusis at the University at Buffalo, Oregon Health and Science University, and Massachusetts Eye and Ear Infirmary. You can learn more about our ERG researchers’ efforts to better understand the mechanisms, causes, diagnosis, and treatments of hyperacusis and severe forms of loudness intolerance here.

We need your help supporting innovative hearing and balance science through our Emerging Research Grants program. Please make a contribution today.

Untreated Hearing Loss Puts Overall Health at Risk

Hearing Health Foundation (HHF) CEO Nadine Dehgan’s “Treating Hearing Health for Better Overall Health” was published online to My Prime Time News following its original print appearance in The American Legion’s December 2017 issue.

The article details how the state of the inner ear impacts other critical functions, like the heart and the brain. Cited are the various conditions that can arise as a result of untreated hearing loss, including cardiovascular disease, dementia, diabetes,  depression, and falls. When the auditory system is functioning well, however, the risk for these ailments declines.

Additionally, hearing loss is also linked to other medical conditions and drugs. People with anemia are twice as likely to have hearing loss. According to Peter Steyger, Ph.D., a scientific adviser to HHF. Further, certain cancer-fighting chemotherapy drugs, such as cisplatin, may permanently harm hearing.

While the relationship between hearing health and overall health is always significant, the publicity of “Treating Hearing Health for Better Overall Health” is an especially timely and helpful follow-up to ERG recipient Harrison Lin, M.D.’s new findings concerning the gaps between self-reported hearing loss and patients evaluation and treatments for hearing loss, which appeared in this month’s issue of JAMA Otolaryngology—Head & Neck Surgery.

Individuals who believe they may have a hearing loss are encouraged to consult an audiologist or ENT, and can learn more about the relationship between hearing health and overall health in the full article on My Prime Time News.

Tuning In

By Laura Friedman

As my three-year work anniversary approaches, I’ve been reflecting on my learnings as a team member of Hearing Health Foundation (HHF). There is one that sticks out the most: As someone who has only known her life as being one with hearing loss and wearing hearing aids (I was diagnosed at age 3 ½), I don’t know what I’m missing, compared with my typical hearing peers. I have learned from those who have acquired hearing loss later in life, even as young adults, that they are acutely aware of the difference in their hearing experience even with assisted listening devices. They aren’t enjoying music like they once did, they have increased difficulties hearing conversational speech around the dinner table and at restaurants, and they are missing things in meetings that the “old” them would never miss.

Ok, I lied. There are actually two major learnings. The second is, which is something I’ve experienced within my own family, is the prevalence of hearing loss denial and the resistance to treating one’s hearing loss. For those who do acknowledge their hearing loss, many do not wear their hearing devices, further isolating them from a world they were previously a part of.

As a young child when I visited my grandfather, who was notorious for not wearing his hearing aids, I told him, “If I have to wear mine, you have to wear yours!” He would give me his signature smirk and appease his granddaughter. But I knew once I left, back in the drawers those hearing aids went.

Denying the existence of an ailment or resisting treatment is not unique to hearing loss; this is true for many diagnosed with other serious and life-changing conditions. However, when it comes to hearing loss, almost one-third of an estimated 40 million U.S. adults with hearing difficulties haven’t even taken the first step to see a specialist for help. What’s even more troubling is today it is estimated that 360 million people worldwide have hearing loss, with 1.1 billion people at risk for acquiring it, according to the World Health Organization.

In the U.S. nearly 25 percent of those ages 65 to 74 and half of those older than 75 have a disabling hearing loss. An even more astounding fact is that over 70% of adults in the U.S. who have hearing loss and who would benefit from a hearing aid don’t have one.

Studies show that untreated mild to moderate hearing loss is linked to increased levels of loneliness and isolation, depression, dementia, and medical conditions like heart disease and diabetes. It can even hurt earning potential and career mobility. Treating hearing loss can significantly offset and decrease the risk of acquiring these consequences. So the question is: If treating hearing loss deters the onset of detrimental health conditions, why aren’t more people taking preventative measures to protect their hearing or taking actionable steps to treat it?

For those in the U.S. there is unfortunately little to no insurance and Medicare coverage for hearing aids, meaning those who need them most are unable afford them. While there’s still a lot left to do, policy is slowly moving in the right direction: In August 2017 the Over-the-Counter Hearing Aid Act was signed into law, paving the way for a new class of hearing aids to enter the marketplace. This will provide greater access to hearing technologies for those with mild-to-moderate hearing loss at a fraction of the price.

I can’t imagine how frustrating it must be to know what you’re missing; it is my wish that nobody has to experience that feeling. This is why I chose to work for an organization dedicated to funding research to develop better technologies, therapies and cures for hearing and balance disorders. Discoveries are the only way to better the listening experience of those with hearing loss and bring more options to the market.

I ask you to do this one thing: Get your hearing tested and encourage your friends and loved ones to do the same. If necessary, treat your hearing loss. Treating hearing loss has been a life-changer for me, as well as millions of others around the world, who choose to tune in, ultimately benefiting our health, work, and life.

Laura Friedman is the Communications and Programs Manager of Hearing Health Foundation. Read her hearing loss story in the Spring 2016 issue of Hearing Health magazine.