Help Us Move Beyond Grateful

By Nadine Dehgan

Thank you for your partnership as we progress toward our dream of cures for hearing loss and tinnitus.

Our researchers are hard at work discovering how reptiles, birds, and fish are able to restore their hearing after being deafened so they can translate this knowledge into cures for mammals and humans. 

When better treatments and cures are discovered, I know Jamie—pictured below with her four children—will be incredibly grateful for the opportunity to have her hearing restored. We will all be grateful.

Jamie's life changed one year ago when her daily activities were suddenly compromised. Words turned into mere muffled sounds—and then silence. She found herself increasingly dependent on lip-reading to avoid asking people to repeat themselves, a request that embarrassed her.

Her fears were confirmed when her doctor determined that Jamie, 32, has severe hearing loss in both of her ears. The doctor was astonished by the intensity of the decline in Jamie's hearing.

Jamie is fortunate to have a supportive and loving husband and family. But she lives in fear she may never be able to hear her beautiful children and other important sounds in her life.

Can you help bring us closer to better treatments and a cure for hearing loss for Jamie and 48 million other Americans with hearing loss?

Please, if you are able, give to HHF today. 100% of your generous gift will be directed to the area of your designation. 

Thank you and happy holidays!

The Gap Between Self-Reported Hearing Loss and Treatment Patterns

By Carol Stoll

Hearing loss is one of the most prevalent chronic conditions in the U.S. and has been associated with negative physical, social, cognitive, economic, and emotional consequences. Despite the high prevalence of hearing loss, substantial gaps in the utilization of amplification options, including hearing aids and cochlear implants (CI), have been identified. Harrison Lin, M.D., a 2016 Emerging Research Grants recipient, along with colleagues, recently published a paper in JAMA Otolaryngology–Head & Neck Surgery that investigates the contemporary prevalence, characteristics, and patterns of specialty referral, evaluation, and treatment of hearing difficulty among adults in the U.S.

Unlike this man who is having his hearing tested, a large number of individuals in the U.S. who experience hearing difficulties are not seeking treatment. Photo source: Bundesinnung Hörakustiker, Flickr.

The researchers did a cross-sectional analysis of responses from a nationwide representative sample of adults who participated in the 2014 National Health Interview Survey and responded to hearing health questions. The data collected included demographic information as well as self-reported hearing status, functional hearing, laterality (hearing ability in each ear), onset, and primary cause (if known) of the hearing loss. In addition, the team analyzed specific data regarding hearing-related clinician visits, hearing tests, referrals to hearing specialist, and utilization of hearing aids and CIs.

Overall, 36,690 records were included in the analysis, which extrapolated to an estimated 239.6 million adults in the U.S. Nearly 17 percent indicated their hearing was less than “excellent/good,” ranging from “a little trouble hearing” to “deaf.” Approximately 21 percent of respondents had visited a physician for hearing problems in the preceding five years. Of these, 33 percent were referred to an otolaryngologist and 27 percent were referred to an audiologist. Of the adults who indicated their hearing from “a little trouble hearing” to being “deaf,” 32 percent had never seen a clinician for hearing problems and 28 percent had never had their hearing tested.

The study shows that there are considerable gaps between self-reported hearing loss and patients receiving medical evaluation and recommended treatments for hearing loss. Increased awareness among clinicians regarding the burden of hearing loss, the importance of early detection and medically evaluating hearing loss, and available amplification and CI options can contribute to improved care for individuals with hearing difficulty. Future studies are warranted to further investigate the observed trends of this study.

Harrison W. Lin, M.D., is a 2016 Emerging Research Grants recipient. His grant was generously funded by funded by The Barbara Epstein Foundation, Inc.

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

HHF Launches Faces of Hearing Loss Campaign

Think of someone you know who has hearing loss. Who do you see?

You envision a relative, but you are not thinking of your 4-year-old niece. A neighbor comes to mind, but not the 32-year-old who lives across the street.

This is a trick question. Hearing loss—and related conditions like tinnitus, Ménière's disease, and hyperacusis—can affect anyone, anywhere. Hearing loss is your 4-year-old niece, your 32-year-old neighbor, your colleague in her mid-20s. Hearing loss affects every age, race, ethnicity, and gender.

No one is immune from developing a hearing and balance disorder—and hearing loss has no single face. To refute common misconceptions that it only affects older adults, HHF has collected images of individuals living with a hearing condition to capture the diversity of its impact across the country. These are HHF’s “Faces of Hearing Loss.”

Participants shared their picture, current age, state of residence, type of hearing condition, and the age at onset or diagnosis. Among the tens of millions of Americans with hearing loss are an 11-year-old boy in Oregon, an 80-year-old woman living in Washington, and a 47-year-old man in North Dakota. These individuals may never meet, but “Faces of Hearing Loss” connects them through their shared experiences.

If you or a loved one has hearing loss, please consider participating in “Faces of Hearing Loss” by completing this brief form, sending in picture, and answering a few basic questions. If you are the parent of a child under 18, you may sign a release form on their behalf.

I Want You to Know About My Hearing Loss

By Lauren McGrath

Maureen “Marzi” Wilson is an author, illustrator, and self-described introvert. As one who goes about life with the tendency to speak less and listen more, she fittingly calls her latest collection of artwork Introvert Doodles.

Marzi does not have hearing loss. “As someone with typical hearing, I believe that I and others like me have a lot to learn from those with hearing loss. We need to pay attention to their experiences,” Marzi writes.

Marzi Wilson's "I'm Deaf/Hard of Hearing" gives individuals with hearing loss a way to voice their experience.

“I’m Deaf/Hard of Hearing” is Marzi’s latest relatable masterpiece about hearing loss in her “I Want You to Know” series. “I Want You to Know” is Marzi’s honest attempt to educate her viewers about hearing loss and other conditions that can be misunderstood or stigmatized. She knows that even the most well-meaning people have misconceptions about what does not affect them firsthand.

Since Marzi does not fully know what it is like to be hard of hearing, her work represents the feelings and experiences of real people with whom she’s connected online. To gather inspiration for her “I Want You to Know” pieces, Marzi engages with individuals who are personally affected. They describe the biases that interfere with their lives and offer practical solutions to their typical counterparts. This process provides “an opportunity for them to voice their experiences—I just illustrate them,” Marzi says, humbly.

In addition to spotlighting hearing loss in “I Want You to Know,” Marzi has previously created doodles on autism, grief, and obsessive-compulsive disorder and plans to craft future illustrations about chronic illness, dyslexia, and miscarriage.

She understands her introverted nature as a creative advantage. In her words, shyness goes hand in hand with being “perceptive, creative, and thoughtful”—the very characteristics needed to compassionately capture important pieces of human experience.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

Give Your Way on #GivingTuesday

By Lauren McGrath

Hearing Health Foundation (HHF) kindly requests your help this #GivingTuesday, an annual international day of giving back.

While making a direct contribution is an option, it isn’t the only way that you can support our shared mission to enhance the lives of millions through better treatments and permanent cures for hearing loss and tinnitus.

2017 was monumental for HHF in that your support enabled HHF to fund more critical hearing research than ever before. Still, more work must—and can—be done. Our Hearing Restoration Project’s Scientific Director, Peter Barr-Gillespie, Ph.D., is optimistic about the progress you’ve already empowered. “The clues are becoming more clear, and we expect the next year will yield a bounty of exciting results,” he shares.

As people around the world unite today in celebration of giving to causes that matter to them, we hope that you are inspired to act on behalf of HHF. Take your pick from the options below to give your way on #GivingTuesday:

Make a Direct Contribution

HHF accepts donations through our website’s secure donation portal and by mail to 363 Seventh Ave, 10th Floor, New York, NY 10001. We pledge to use your gift wisely. Our responsible and effective donor stewardship practices have been commended by Better Business Bureau Wise Giving Alliance, Consumer Reports, Charity Navigator, CharityWatch, and GuideStar. All donors are recognized and acknowledged in our Annual Report.

If you are able to give today, Tuesday, November 28, consider making your donation through our Facebook page, where your donation will be generously matched by the Bill & Melinda Gates Foundation.

Start a Community Fundraiser

You needn’t support Hearing Health Foundation's critical hearing loss research and awareness programs on your own. Reach out to your community—your friends, family, neighbors, colleagues, or classmates—to give on your behalf as an HHF Community Fundraiser on Facebook or Classy. Please take advantage of our simple toolkits to ensure your fundraiser is a successful one.

Go Shopping

Perhaps the simplest way of all to give is to put your personal shopping to work for HHF—at no additional cost to you! If you are scoping out savings opportunities on Amazon, be sure to make your purchase through AmazonSmile and designate HHF as your charity of choice. If you are shopping on one of many other popular retailers’ sites like CVS, Nike, Etsy, Groupon, Macy’s, or Modell’s, you may allocate a percentage of your purchase to HHF through iGive.

Please email us at info@hhf.org if you are experiencing difficulty or have questions about our ways to give. Thank you for considering HHF on #GivingTuesday.

Cellular Changes and Ménière’s Disease Symptoms

By Carol Stoll

Ménière’s disease is characterized by fluctuating hearing loss, vertigo, tinnitus, and ear fullness, but the causes of these symptoms are not well understood. Past research has suggested that a damaged blood labyrinthine barrier (BLB) in the inner ear may be involved in the pathophysiology of inner ear disorders. Hearing Health Foundation (HHF)’s 2016 Emerging Research Grants (ERG) recipient Gail Ishiyama, M.D., was the first to test this proposition by using electron microscopy to analyze the BLB in both typical and Ménière’s disease patients. Ishiyama’s research was fully funded by HHF and was recently published in Nature publishing group, Scientific Reports.

The BLB in a Meniere’s disease capillary. a) Capillary located in the stroma of the macula utricle from a Meniere’s subject (55-year-old-male). The lumen (lu) of the capillary is narrow, vascular endothelial cells (vec) are swollen and the cytoplasm is vacuolated (pink asterisks). b. Diagram showing the alterations in the swollen vec, microvacuoles are also abundant (v). Abbreviations, rbc: red blood cells, tj: tight junctions, m: mitochondria, n: cell nucleus, pp: pericyte process; pvbm: perivascular basement membrane. Bar is 2 microns.

The BLB is composed of a network of vascular endothelial cells (VECs) that line all capillaries in the inner ear organs to separate the vasculature (blood vessels) from the inner ear fluids. A critical function of the BLB is to maintain proper composition and levels of inner ear fluid via selective permeability. However, the inner ear fluid space in patients with Ménière’s has been shown to be ballooned out due to excess fluid. Additionally, the group had identified permeability changes in magnetic resonance imaging studies of Meniere’s patients, which may be an indication of BLB malfunction.

Ishiyama’s research team used transmission electron microscopy (TEM) to investigate the fine cellular structure of the BLB in the utricle, a balance-regulating organ of the inner ear. Two utricles were taken by autopsy from individuals with no vestibular or auditory disease. Five utricles were surgically extracted from patients with severe stage IV Ménière’s disease with profound hearing loss and intractable recurrent vertigo spells, who were undergoing surgery as curative treatment.

Microscopic examination revealed significant structural differences of the BLB within the utricle between individuals with and without Ménière’s disease. In the normal utricle samples, the VECs of the BLB contained numerous mitochondria and very few fluid-containing organelles called vesicles and vacuoles. The cells were connected by tight junctions to form a smooth, continuous lining, and were surrounded by a uniform membrane.

However, samples with confirmed Ménière’s disease showed varying degrees of structural changes within the VECs; while the VECs remained connected by tight junctions, an increased number of vesicles and vacuoles was found, which may cause swelling and degeneration of other organelles. In the most severe case, there was complete VEC necrosis, or cell death, and a severe thickening of the basal membrane surrounding the VECs.

The documentation of the cellular changes in the utricle of Ménière’s patients was the first of its kind and has important implications for future treatments. Ishiyama’s study concluded that the alteration and degeneration of the BLB likely contributes to fluid changes in the inner ear organs that regulate hearing and balance, thus causing the Ménière’s symptoms. Further scientific understanding of the specific cellular and molecular components affected by Ménière’s can lead to the development of new drug therapies that target the BLB to decrease vascular damage in the inner ear.

Gail Ishiyama, M.D., is a 2016 Emerging Research Grants recipient. Her grant was generously funded by The Estate of Howard F. Schum.

WE NEED YOUR HELP IN FUNDING THE EXCITING WORK OF HEARING AND BALANCE SCIENTISTS. DONATE TODAY TO HEARING HEALTH FOUNDATION AND SUPPORT GROUNDBREAKING RESEARCH: HHF.ORG/DONATE.

Talk to Your Loved Ones About Hearing Loss, HHF Urges in Renew Magazine

Hearing Health Foundation (HHF) Board of Directors member Anil Lalwani, M.D. and Communications and Programs Manager Laura Friedman recently shared their expertise about untreated hearing loss and how to encourage a loved one—with compassion—to get help.

The story, "Heart of Hearing," is found on page 26 in the latest issue of Renew, a publication of United Healthcare and AARP. 

“Regardless of age, type of hearing loss, or cause, if left untreated or undetected, hearing loss can have negative effects on your well-being,” says the Hearing Health Foundation’s Laura Friedman. “Untreated hearing loss can lead to numerous negative social, psychological, cognitive and health effects, and can seriously impact professional and personal life, at times leading to isolation and depression.” 

As the consequences of untreated hearing loss can be devastating, Anil Lalwani urges readers to offer encouragement to their loved ones with untreated hearing loss. 

“Often the individual with hearing loss is unaware of what they cannot hear,” explains Lalwani. Whether you think your loved one is aware of his or her potential hearing loss or not, it’s important to approach the topic lovingly."

Read the full piece in Renew magazine on page 26. 

Meet, Play, Love: A Deaf Baby Boomer's Account of Her Dating Experiences

By Mary Grace Whalen

Going out into the world of dating was a real shocker for me after my husband of 32 years had passed away.  I asked a friend one day, “What are the rules for dating at this stage of life?” His answer was, “There are no rules.” 

Some of the funniest experiences I have had have been through online dating. Men lie about their age. When you meet them in person, they don’t look anything like their picture. I never went out with anyone who didn’t post a profile picture. Show your face if you have nothing to hide. Then there is the type who has no picture, no profile information but just messages you with a phone number. Huh? What is there to love about someone who won’t be transparent? Then there is the type that posts a profile like it is a resume listing all their accomplishments since the Beatles came to town, letting us know they were at Woodstock and that everyone thinks they are really perhaps 35 or 40. Right!

At the end of my work life, I was an adjunct professor of English. I taught writing and research courses, and I found myself mentally marking up online profiles with that little red pen in my head. If you are going to lie, use spellcheck!

Here are some examples:

“I went to collage.”

“I am a docter.”

“I like feminine woman who wear colon.”

I’ve had some strange dating experiences. Take the hairstylist who was eager to match me up. Bingo! She knew a man who wore hearing aids, was my age and loved traveling all over the country in his RV, — something I would like to do someday. But that is where the similarity ended as I soon learned. After telling him I was trying to lose weight he ordered plate after plate of appetizers, insisting that I taste them all. I’m sure he meant well. But he spent the whole night lamenting about how his second wife left him, — taking most of his assets before leaving. He never asked me anything about my life.  

A few years after being on my own I received my first cochlear implant. One guy I dated wanted to know if my hearing loss would get worse. I told him I did not come with a warranty.

Then there is the guy I met at Panera Bread for coffee. He suddenly stepped out from a hidden doorway when he saw me. Was he going to slip away if he didn’t like what he saw?

One man posted an online profile picture that had to be from 20 years ago. When he showed up, he looked like he might have escaped from a nursing home. It was actually very nice to talk to someone smart, but he wasn’t smart enough to realize I could figure out his age by his comments related to his college days and matching it to history. 

The beauty of this age is that we are not out to impress anyone or yield to their limitations. We date whomever we wish, and many of us care more about mutual values than background. Diversity can only enrich our experience. A dedicated, loving partner trumps differences.

I have since given up on online dating, although I know some who have had good experiences. But I haven’t given up on love. They say you will meet someone when you least expect it. In the meantime, someday if my husband and I do meet again in the hereafter, I have some funny stories to tell him.

Former Hearing Health magazine staff writer Mary Grace Whalen is a freelance writer and the author of Living in the Color Magenta due for publication in 2018. You can visit her website www.marygracewhalen.com or read some of her other blog articles at www.deafgrayanditalian.com.  

The Hearing Journey: What Matters to You?

By Laura Friedman

Participants used post-it notes to express their desired improvements to the hearing journey. Photo by Darcy Benson.

Recently, in October 2017, I represented Hearing Health Foundation (HHF) at a seminar that took place in Skodsborg, Denmark, where I and 30 other attendees from around the world were tasked with closely exploring and developing tactical strategies to better the patient experience when receiving audiological care.

The seminar conversations focused on person-centered care, a treatment model that focuses on the whole person, rather than just the ailment or condition experienced by the patient. The peer-reviewed Permanente Journal says that person-centered care is “based on accumulated knowledge of people, which provides the basis for better recognition of health problems and needs over time and facilitates appropriate care for these needs in the context of other needs.” Furthering this sentiment, the World Health Organization identifies empowerment, participation, the central role of the family, and an end to discrimination as the core values of person-centered care.

The two-day symposium was titled, “The Hearing Journey: What Matters to You?” The 31 attendees fell into one or more of the following groups: individuals with hearing loss, representatives from prominent consumer-driven associations for people with hearing loss, audiologists, and hearing healthcare thought leaders. The conference was hosted by the Ida Institute, a Denmark-based nonprofit that aims to better understand human dynamics associated with hearing loss.

The symposium participants pose as a group. Photo by Darcy Benson.

One of the most eye-opening takeaways was recognizing that all those who are part of the care-cycle feel shared sentiments of frustration, poor communication, lack of access, and high costs. Addressing each of these hurdles from a variety of vantage points is key to bettering person-centered care and may not be limited to just audiological care, but rather medical care as whole.  

Exercises and projects resulted in several meaningful insights related to person-focused hearing healthcare. We spoke openly about stigma, barriers to rehabilitation, and the need for creating a “new narrative” for how we speak about hearing loss. Changing how we talk about hearing loss, such as how our current nomenclature addresses it as a loss or deficit, will hopefully play a role in changing social stigmas and taboos experienced by those who are hard of hearing, like myself.

HHF's Laura Friedman presents to the group with Paul Breckell, Chief Executive of Action on Hearing Loss. Photo by Darcy Benson.

All parties stressed the importance of including caregivers and family members in the rehabilitation process, and the need for a multidimensional model of care to address the psychological and emotional aspects of hearing care. This included developing a “human audiogram” to discuss diagnoses and their subsequent treatment options in more friendly terms that empowers the patient, rather than discouraging them. It was also advised that clinicians should be more cognizant that diagnoses are difficult for the patient to come to terms with and remember that the most successful patients want treatment, but that it may take time for them to feel motivated to take that next step. Follow-up appointments, rather than immediate discussion of treatment options, was a suggestion most agreed would serve the patient and clinician well.

I feel honored to had been afforded the opportunity to represent HHF at this important symposium and to meet and learn from fellow leaders in the hearing healthcare space. I look forward to working with Ida and my fellow attendees to develop and employ tangible tools and solutions to better a patient’s hearing journey both in and out the audiologist's office, as well as provided better resources to health care providers.

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.

Therapies for Hearing Loss: What Is Being Tested?

By Pranav Parikh

Untreated hearing loss is linked to a lower quality of life, physical functionality, and communicative ability. The most common type of hearing loss, sensorineural, is often a result of damage to the delicate sensory hair cells in the inner ear. Because hair cell loss is irreversible, and hearing impairment therefore permanent, new treatment strategies are a welcome sign. In the July 2017 issue of Otology & Neurotology, Hearing Restoration Project (HRP) consortium member Ronna Hertzano, M.D., Ph.D., and Debara L. Tucci, M.D., a member of Hearing Health Foundation’s Council of Scientific Trustees (CST), along with Matthew Gordon Crowson, M.D., examined the field of emerging therapies for sensorineural hearing loss.

The team identified 22 active clinical drug trials in the U.S., and reviewed six potential therapies. Four use mechanisms to reduce oxidative stress believed to be involved in the inner ear cell death. Three of the therapeutic molecules being tested—D-methionine, N-acetylcysteine (NAC), and glutathione peroxidase mimicry (ebselen)—act as antioxidants to mop up free radicals caused by noise or other trauma to the inner ear. (For more about D-methionine, see page 11.) The fourth, sodium thiosulfate, is a chemical found to counteract the ototoxic effects of chemotherapy drugs.

The fifth approach is to manipulate the “cell death cascade.” This occurs when cells endure significant stress or injury, leading to the release of free radicals and changes in pH and protein that then kill the cell. Since hair cells do not regenerate like other cells, the cell death cascade causes permanent hearing loss. A trial is underway to make the cochlear neuroepithelium (inner ear tissue) more resilient to cell death signaling, using an inhibitor called AM-111 to block the chain of events leading to cell death. Finally, the sixth approach is a novel hair cell replacement therapy using the gene Atoh1, known to be a vital regulator of hair cell regeneration, causing cells to differentiate (change) into hair cells. Using mouse models, it has been shown that if Atoh1 is blocked, hair cell differentiation does not occur, and if it is induced, hair cell formation occurs, at least in the ears of very young mice.

Drug delivery methods to the inner ear are also being investigated. In addition to orally, delivery methods include a topical ear gel, intravenous infusion, and, most revolutionarily, direct injection of viruses to deliver genes to the inner ear. And while many of the drugs had to overcome hurdles to reach late-phase clinical trials, questions about safety, efficacy, and side effects remain, in addition to whether animal model results translate to human biology.

HRP consortium member Ronna Hertzano, M.D., Ph.D. (far left), is an assistant professor at the University of Maryland School of Medicine. HHF CST member Debara L. Tucci, M.D., is a professor at Duke University Medical Center in North Carolina.

This article originally appeared in the Fall 2017 issue of Hearing Health magazine. Find it here, along with many other innovative research updates. 

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