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. 

Empower the Hearing Restoration Project's life-changing research. If you are able, please make a contribution today.

A Tribute to Our Nation’s Veterans

By Laura Friedman

Each year on Veterans Day, November 11, we proudly honor the men and women who have bravely served our country and fought to protect our freedoms.

Veterans Day is important because it honors our soldiers and it is a time to raise awareness about their experiences on and off the battlefield. Noise-induced hearing loss (NIHL) and tinnitus (ringing in the ears) are the top two health conditions among military veterans, according to the U.S. Department of Veterans Affairs (VA). By the end of fiscal year 2016 over 1 million veterans received disability compensation as a result of hearing loss, and about 1.6 million received compensation for tinnitus.

In addition to being disproportionately affected by hearing loss and tinnitus, our soldiers and veterans are also more susceptible to developing central auditory processing disorders (CAPD). CAPD occurs when one can hear sounds but is unable to understand the words. It is sometimes caused by intense exposure to sudden and loud noises from improvised explosive devices (IEDs), ammunition and engine noise.

"Both post-blast trauma and CAPD are difficult, diffuse disorders where more work is needed, particularly on people working in extreme conditions, acoustic and otherwise, such as veterans." —Edward Bartlett, Ph.D., Associate Professor, Biological Sciences and Biomedical Engineering Purdue University

Blasts can result in temporary hearing loss and put military personnel at risk. However, the word “temporary” should be approached with caution: Repeated short-term hearing loss can damage the sensitive hair cells in the inner ear, leading to permanent hearing loss.

Hearing loss and tinnitus as a result of noise is largely preventable. There’s a misconception that not using hearing protection would inhibit vital communication and mission readiness. With today’s increasingly sophisticated technology, soldiers no longer need to choose between protecting their ears or their lives. Wearing hearing protection such as noise-attenuating helmets, which use ear cups to protect against hazardous sound, or Tactical Communication and Protective Systems, which protect against loud noises while amplifying soft ones, can go a long way to reduce overall exposure, while ensuring vital communications.

Any form of hearing loss can be detrimental to soldiers on duty, as the ability to hear signs of danger and to communicate with fellow soldiers is crucial for mission success and survival. Off-duty, hearing loss and tinnitus can also impact one’s well-being.

Regardless of age, type of hearing loss, or cause, if left untreated or undetected hearing loss can lead to considerable, negative social, psychological, cognitive, and health effects. As a result, it can seriously impact professional and personal life, potentially leading to isolation and depression. Treating hearing loss can also decrease one’s risk of acquiring other serious medical conditions, such as cardiovascular disease, dementia, and diabetes.

Veterans who have acquired hearing loss and tinnitus, either as a result of war or through other causes, can seek treatment at their local Department of Veterans Affairs (VA) medical center. Through partnerships with local community providers, the VA offers comprehensive hearing health services including screening, evaluation, treatment, and/or management of hearing, tinnitus, and balance disorders.

While it may be daunting to take the initial step of having a hearing test, it is important to know there are many different treatment options available. Some forms of hearing loss, such as those that affect the middle ear, are treatable through surgery. Damage to the inner ear and auditory nerve can cause permanent hearing loss; however technologies such as hearing aids, assistive/alerting devices, TV and telephone amplifiers, and cochlear and other auditory implants can optimize residual hearing by amplifying sounds.

As for tinnitus treatments, many patients have seen improvements with counseling and sound therapy, cognitive behavioral therapy (CBT), and the use of white-noise machines. Be sure to discuss the cause of your hearing loss and tinnitus and various treatment options with your audiologist or ear, nose, and throat specialist (ENT).

“On this and every Veterans Day, HHF sincerely thanks our military and our veterans for their brave service and sacrifice. I would also encourage all members, past and present, to have their hearing tested and monitored by a hearing health professional on a regular basis.” —Nadine Dehgan, CEO, Hearing Health Foundation.

Please visit va.gov/directory/guide to find your local VA medical facility. Please also see our Fall 2017 issue of Hearing Health magazine, whose theme is Veterans & Seniors, available at hhf.org/magazine.

One Man's Military Perspective

By Colonel John T. Dillard, U.S. Army (Retired)

The top two disabilities for our returning veterans from Iraq and Afghanistan are hearing loss and tinnitus, or ringing of the ears (which is actually a sound inside the brain). Both conditions became a problem for me and for many of my friends in the service. A lifetime spent in the U.S. Army, starting in the 1970s, meant frequent exposure to gunfire and proximity to screaming jets and helicopter engines.

Even during a peacetime career in the military, our soldiers, sailors, airmen, and marines are subject to a barrage of auditory insults from the weapons and equipment they operate. It all stacks up to a gradual, although sometimes very abrupt, loss of hearing, usually starting at the higher frequencies. For those in the service, any age-related decline in hearing gets accelerated, to the extreme, by repeated exposure to noise at unsafe levels.

For me, tinnitus began faintly and increased with more hearing loss, reaching a crescendo with one big acoustic trauma—a gunshot right next to me in 2009. I immediately began searching for any kind of treatment that would alleviate the loud ringing in my head, which was actually measured in a laboratory at being around a constant 70 decibels. That is roughly equivalent to the noise inside a fairly strong shower, and I soon discovered that people would use long showers to find a bit of relief by masking their tinnitus. (However, I take short showers!)

Armed with a background in biology and technology, I began to review all the research I could find. As it turns out, the typical tinnitus condition consists of several brain components: auditory (hearing it); attentional (your awareness of it); memory (persistence); and emotional (how it affects your mood). After many hours on the web, I spent thousands of dollars on things that didn't work, undergoing treatments in all areas of pharmacology, sound therapy, acupuncture, hyperbaric oxygen, and even transcranial magnetic stimulation.

None of these had any effect for me whatsoever. And despite some incredible recent advances in neuroscience to better understand all of the brain’s complexities, there is still no proven cure or even a viable treatment for tinnitus or to reverse hearing loss.

I eventually realized I would have to tackle my tinnitus with the only things out there that to me were credible for managing tinnitus. I eventually found an audiologist who would fit me with hearing aids that provided a built-in tinnitus masking sound. Without a doubt, this became the best purchase decision of my life...

Continue here to read the full version of "One Man's Military Perspective" in the Fall 2017 issue of Hearing Health. Colonel John T. Dillard, U.S. Army (Retired), resides in Carmel, California, with his wife of 30 years. A senior lecturer at the Naval Postgraduate School in Monterey, Dillard spent his army career serving in mechanized and parachute infantry assignments and managing programs to bring new technological capabilities to warfighters. He serves on a consumer review panel of tinnitus treatments for the Department of Defense (DoD)’s Congressionally Directed Medical Research Programs and also conducts acquisition policy research for the DoD.

Universal Newborn Hearing Screening to Prevail Under EHDI Act of 2017

By Nadine Dehgan

Federal funding for universal newborn hearing screening will prevail until 2022 under the The Early Hearing Detection and Intervention (EHDI) Act of 2017, which officially became law last month. Hearing Health Foundation (HHF) is ecstatic that there was bipartisan support for critical early testing and intervention for children with hearing loss.

Introduced in March by Representatives Brett Guthrie (R-KY) and Doris Matsui (D-CA) as an amendment to the Public Health Service Act, the EHDI calls for early detection, diagnosis, and treatment of deaf and hard-of-hearing newborns, infants, and young children. Each day nationwide, 33 newborn babies—approximately three out of every 1,000 births—are diagnosed with hearing loss, making it the most common congenital birth defect. Left undetected, hearing loss can negatively impact a child’s speech and language acquisition, academic achievement, and social and emotional development.

HHF, a long-time supporter of universal hearing screening for newborns, applauds the enactment. HHF was instrumental in highlighting the need for similar legislation in the 1990s. In 1993, only 5% of newborns were tested at birth for hearing loss. By 1997, 94% were tested before leaving the hospital, and today 97% of babies are screened before they leave the hospital.

Earlier drafts of the federal budget put the coverage of these crucial procedures at risk, prompting legislators in both the Republican and Democratic Parties to take action quickly. In addition to the bill in the House, a companion measure was introduced in the Senate by Senators Rob Portman (R-OH) and Tim Kaine (D-VA). In early October, the House passed the Act following the Senate’s unanimous approval in September.

“This program exemplifies the importance of early detection and intervention,” said Congresswoman Matsui. “By ensuring that infants have access to hearing screenings at birth, parents can make informed choices about their care management early on. This is critically important, given that so much of a child’s development happens in the first few years of their life. I’m pleased that through the passage of this legislation, the newborn screening and intervention program can continue to improve health outcomes for kids.”

I Will Never Know What It’s Like to Not Feel Dizzy: My Ménière's Journey

By Lauren Edmiston

I can still remember the beginning—it’s my earliest childhood memory.

I was in the hallway of a house with my mom, my grandfather, and my brother when I started to feel weird, so I ducked into a walk-in closet to recover. Down on my hands and knees in the closet, the floor was caving in. I began falling in lightning speed, couldn't grab anything, and could only see bits and pieces of light. My surroundings were blurry.

I was a four-year-old girl simply exploring the hallway of a house. That first memory was, in fact, my first ever full-blown episode of vertigo.

I was taken to the hospital for my first of many tests and doctor's visits as a child. Vertigo was not on anyone’s radar, much less Ménière's disease for someone so young. I was misdiagnosed repeatedly, starting with potential brain tumors and neurological disorders.

The dizzy spells continued throughout my childhood and became normal to me. Waking up some mornings and not being able to get out of bed was normal. Not being able to function with tall ceilings was normal. Sitting at church knowing that if I stood up from the pew to take about five steps I’d have an episode was normal. That sensation that starts out much like an anxiety attack, a sensation that I’d feel through my entire body before suddenly spinning uncontrollably, was normal. But it wasn't normal. I advocate for that little girl today because now I know the truth. It was a hard journey learning that I was different.

I was homeschooled, so it wasn’t until around age eight when I realized that not all kids functioned like I did and that there was something "wrong" with me. I was determined to do things my friends did, like gymnastics and soccer. Yes, I did both. Yes, I fell on the balance beam. Yes, I fell on the field. But I kept going.

Adulthood is not easy with Ménière's disease. But childhood with Ménière's disease? It shouldn't happen. Ménière's disease was still not an option or even discussed because of my age. I was 10 when my mother's best friend was diagnosed with Ménière's and recommended a doctor at the ear clinic. My mother’s friend and I always had similar quirks, after all.

I went and, just like that, I was diagnosed—officially this time. Six years of being “just a little different" instantly explained. But also, just like that, there was the realization that not a whole lot could be done. It was not very common to be a child with Ménière's disease—in both ears.

I entered a remission phase at 19 and I'm now 26 with two kids. I still have Ménière's and I will never know what it's like to not be dizzy. I still experience the dreaded ringing and fullness. I'm still incredibly sound-sensitive and I still have days where I wonder how I'm going to get through it with my kids.

I tell my story for parents that might be going through Ménière's with their children. I tell it for people that read my words and can relate to every single one. You’re not alone. You’re not just sensitive to your surroundings. You’re not over exaggerating; you fight a silent illness, you navigate an alternate universe. Never stop fighting for a better quality of life.

But, also, remember to share your story with honor. If you can relate, you can help impact lives of people just like you and me.

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