MARCH 2020 | FUTUREOFPERSONALHEALTH.COM
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VISION + HEARING HEALTH
The MLB player wouldnâ€™t let his rare eye condition keep him from the game
Glaukos Corp. highlights why young people should take preventative measures to get their eyes checked The assistive tech a Sony exec utilizes to amplify her hearing The new FDAapproved medicine to treat thyroid eye disease is going to change lives
Thyroid Eye Disease and the Power of Your Voice At Horizon Therapeutics, we have dedicated a significant amount of time and effort to researching and developing a new medicine for Thyroid Eye Disease (TED), inspired and driven by the stories from people impacted by this debilitating disease. This work culminated earlier this year with our medicine becoming the first and only treatment for TED approved by the U.S. Food and Drug Administration (FDA). This would not have been possible without the partnership of healthcare professionals, advocacy organizations and, most importantly, people living with TED. TED is a serious, progressive, vision-threatening rare autoimmune disease. In medical terms, TED causes the muscle and fat tissue behind one or both eyes to become inflamed and swollen, resulting in debilitating symptoms like eye bulging, double vision, persistent irritation, light sensitivity, and pain. In human terms, this means a person can lose the ability to drive, work, and read, which can also lead to social isolation and depression. If you identify with these stories, we encourage you to take action, share what you’re going through, and seek help. To find a nearby specialist who is knowledgeable about TED, visit TEDSpecialist.com. Elizabeth H.Z. Thompson, Ph.D., Group Vice President, Clinical Development and External Search, Horizon
The Advanced Eye Procedures Helping Patients With Keratoconus
PHOTO: DR. NEDA SHAMIE
Keratoconus, a vision impairing medical condition, was considered untreatable for many years, but new advanced surgical options are changing the field. With her eye on advanced surgical options, Dr. Neda Shamie, an ophthalmologist and specialist in advanced eye surgeries in Los Angeles, helped pioneer a procedure that offers fresh hope for patients with keratoconus, a condition in which the cornea thins, leading to blurred vision and light sensitivity. “We started off looking at keratoconus as a relentless condition that we really couldn’t stop from progress-
ing. We would just watch these patients, many of whom were young, gradually losing their vision, becoming more and more dependent on glasses and contacts, and then ultimately would need a corneal transplant.” “Now when I see a keratoconus patient, I don’t have this gloom-and-doom feeling like this patient is going to need a corneal transplant before the age of 40,” Dr. Shamie said. “My real interest in it was the elegance of the surgical procedures, the incredible impact you can have on patients’ lives, and how quickly you can give them those results,” she said of
what drew her to the field. “I could foresee the application of really advanced exciting technology.” While Dr. Shamie became the first person in the Midwest to offer artificial corneal transplantation, she also practices collagen cross-linking, a minimally invasive procedure that strengthens the cornea by creating new links in the collagen fiber. It prevents keratoconus from advancing to the point where a corneal transplant is required. “Collagen cross-linking has caused an absolute paradigm shift in the way that we manage keratoconus,” she said. “Corneal transplant rates where the indication was keratoconus have plummeted.” Additionally, Dr. Shamie believes in genetic testing as an advanced diagnostic tool for keratoconus and encourages people to have their eyes checked from a young age. “Genetic testing is going to be that diagnostic tool which will pick up at-risk patients where we could potentially stop the disease in its progression,” she said. “It’s critical that we change our culture and our mentality to not ignore the eyes, because isn’t vision one of the most important senses we have?” n Ross Elliott
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Young people experiencing blurry vision, frequent prescription changes, and poor night vision might be dealing with a condition called keratoconus. Keratoconus is a disease that affects about 1 in 2,000 people in the United States. If left untreated, keratoconus will steadily degrade your vision; about 20 percent of patients will ultimately need a corneal transplant. “In people with keratoconus, the cornea develops a thin, weakened area, which protrudes forward,” says Thomas W. Burns, president and CEO of Glaukos, an ophthalmic medical technology company. “This abnormal shape causes distortion of vision.” Burns stresses that anyone who suspects they have keratoconus should seek out a specialist immediately. “Keratoconus is a progressive condition, meaning that if left untreated, it gets worse with time,” he says. Treatment Effective treatments include corneal implants and what’s known as corneal cross-linking, like the iLink procedure from Glaukos which is the only FDA-approved cross-linking procedure in the United States. It’s a minimally invasive procedure combining photosensitizing eye drops and light exposure, causing the cornea to strengthen, thus stopping the progression of keratoconus. These treatments offer hope to young people whose vision is threatened by this disease. “If we intervene early,” Burns says, “we can stop the progression of this disease in most cases — before functional vision is lost.” Jeff Somers 4 • FUTUREOFPERSONALHEALTH.COM
MLB’s Tommy Pham Overcomes the Odds With a Rare Eye Condition San Diego Padres outfielder Tommy Pham is the only player in the MLB to play ball with a rare eye condition. Now, he wants to use his story to inspire others with the disease to similarly overcome the odds. “I’m very fortunate in the MLB with keratoconus, but from my success I’m able to help others,” he said. “There’s a ton of people with keratoconus who are down because their keratoconus stage may be so bad that they can’t drive anymore. I’m able to be that positive influence on keratoconus patients around the world.” A healthy cornea is shaped like a dome. With keratoconus, the cornea bulges out like a cone, affecting the way light reflects in the eye and blurring vision, according to the American Academy of Ophthalmology. Pham, now 31, was diagnosed with keratoconus in
2008 after struggling at bat for two seasons. The diagnosis was a relief. He recalled thinking, “I’m definitely [going to] start hitting the ball better when I get my vision right.” After all, there would be consequences if not. Recalling the pressure, he said, “This is my livelihood — if I don’t play well, I could lose my job.” First, he asked about LASIK surgery, a procedure approved by the Food and Drug Administration that corrects refractive errors in the cornea. However, due to his complex situation, Pham’s eye doctor was quick to tell him he’d need to get fitted for contact lenses. “I was relieved that now we had a solution to my hitting, but at the same time I was a little frustrated because the whole process of having something in my eye was uncomfortable,” he said.
Pham uses what’s called a rigid glass permeable wave contact lens, which gives him the best acuity while playing baseball. He also underwent a procedure called corneal cross-linking. According to the University of Michigan, the minimally invasive procedure strengthens the collagen fibers in the cornea by using ultraviolet light and eye drops, and helps halt the progression of keratoconus. Beforehand, a corneal transplant was the main treatment for keratoconus. Now, he’s encouraging others to follow suit while raising money to help keratoconus patients better afford treatment. “If you can’t afford [treatment], which a lot of people can’t, I would like them to go to the [National] Keratoconus Foundation and look for help,” Pham said. ■ Melinda Carter MEDIAPLANET
PHOTO: SAN DIEGO PADRES
The Facts about Keratoconus and Your Vision
Cheryl K. Goodman, Head of Corporate Communications and Corporate Social Responsibility at Sony Electronics Inc. North America, discusses how advances in technology helped restore her hearing. Tell us about your hearing loss. I walked into a critically important meeting “normal” and left panicked that I hardly captured anything said. I prayed this was trapped water from surfing, but I was diagnosed with otosclerosis. My hearing loss was actually progressive, but I dismissed early indicators and had a “sudden” realization of the depth of my limitations at the worst possible moment. How has your life changed personally and professionally? I was distraught but determined to do whatever was necessary to restore my hearing. While I was grateful to see that hearing aids were discreet and powerful, I was surprised how insurance didn’t help in any way to offset the $7,000 expense. Being in the technology industry for 20 years, I knew that apps, devices, and wireless technologies were changing the quality of life for the hearing impaired. I was able to restore some of my hearing through a series of surgeries. What assistive tech have you incorporated into your life? Hearing aids with streaming abilities have been the primary tech. There are also apps such as Sonic Cloud that allow for customization though your phone. Being at Sony allowed me to understand the importance of accessibility across all platforms — whether it’s closed captions on TV or the immersible wearable speaker. 6 • FUTUREOFPERSONALHEALTH.COM
PHOTO: JAMES JAEGER
Sony Exec’s Hearing Loss Reinforced Her Commitment to Accessibility
Hearing-Impaired Doctors Don’t Let Disability Keep Them From Helping Others The Association of Medical Professionals with Hearing Losses (AMPHL), whose members and followers number in the thousands, share some of the hearing loss accommodations its members have utilized from consultations to surgery to go about their workday. Fortunately, times are changing due to the expanding array of assistive technologies and the support of the Americans with Disabilities Act. Organizations such as AMPHL highlight the impressive contributions of these healthcare providers in addressing the longstanding health inequities that patients with disabilities experience. - Dr. Michael McKee, M.D., M.P.H, Assistant Professor, Department of Family Medicine, University of Michigan “How do you listen to their hearts?” That’s the most common question I get as a deaf physician and medical educator. To check my patients’ heart sounds, I connect my stethoscope’s cord to my cochlear implant processor, an already outdated approach. New stethoscopes can wirelessly send heart valve sounds to hearing aids or sound processors, eliminating the tethering cord. For the more visually inclined, some stethoscopes can transmit visual readouts of those sounds to smartphone apps. The rapidly growing number of doctors and other healthcare professionals with hearing loss will benefıt from even more innovative approaches in the future. - Christopher Moreland, M.D., MPH, Internal Medicine Physician & Associate Professor of Medicine, President of AMPHL It was my fırst time seeing a human heart, this one being resuscitated outside of a 28-year-old trauma patient. The trauma surgeon instructed the deaf medical student to stop the bleeding, which is where my work as a designated sign language interpreter (DI) got interesting. DIs dive into new territory, create signs for medical terminology and adapt the interpreter’s role for more dynamic outcomes. Being a DI means knowing when to challenge traditional interpreting methodologies, when to team up with medical captioners, and when to utilize emerging adaptive technologies to ensure full communication access for deaf professionals. - Alicia Booth, B.A., B.S., NIC, Designated Sign Language Interpreter, Founder of Designated Interpreters LLC “I have floaters and vertical streaks in my right eye,” my patient stated. These verbalized words streamed across my smartphone app as text. As a neuropsychologist with a profound hearing loss, I rely on speech-to-text apps such as Ava or App MyEar when working with patients who do not use ASL. The patient — who turned out to have a chronic subdural hematoma — was mostly oblivious to my use of the app. Speech-to-text apps provide a discreet and reliable way of accessing verbal information that a hearing loss might otherwise prevent. - Jaime A.B. Wilson, Ph.D., ABN, Board-certifıed Neuropsychologist and Immediate Past President of AMPHL
The New Technology That’s Helping Reduce the Stigma of Hearing Aids The World Health Organization estimates 466 million people worldwide have disabling hearing loss — they estimate that number will grow to over 900 million people by 2050.
Black because he could blend in with his friends who wear headphones and earbuds all the time.
PHOTO: COURTESY OF PHONAK
istorically, people with hearing loss have been reluctant to wear hearing aids. But that’s changing. Modern technology and styling are helping make it a more positive and even fashionable experience. Fighting stigma Statistics show it takes a consumer seven years from the time they think they have hearing loss until they get diagnosed and treated. Untreated hearing loss could result in anxiety and depression. “Your ears are always working and if you have hearing loss, they’re working double time trying to compensate,” says Rachel Bishop, AuD., an audiologist and launch program manager at Phonak’s global headquarters in Switzerland. Stigma might be a factor in not seeking treatment, as people often associate hearing loss with aging. “If you ask people, ‘Why don’t you get a hearing aid?’ patients often report that stigma has something to do with the equation,” says Gurjit Singh, Ph.D., adjunct professor at the University of Toronto and senior research audiologist for Sonova,
the parent company of Phonak. He says more than half of the people in the Developed world who could benefit from hearing aids do not obtain them.” But ignoring hearing loss doesn’t help. In fact, it may make a person’s health worse. According to a six-year study from Johns Hopkins, researchers found on average that older adults with hearing loss developed a significant impairment in their cognitive abilities, such as thinking and remembering, over three years sooner than older adults with normal hearing. That research suggests consumers should get their hearing tested and if hearing loss is diagnosed, use hearing aids prescribed by a licensed professional. New tech Now there’s a new approach to hearing aids: making them as fashionable as they are functional.
Phonak recently premiered its Virto Black, the world’s fi rst custom-made hearing aid that combines breakthrough Marvel hearing technology with the modern stylings of an earbud. The hearing aid directly streams from both iOS®, Android™, and other Bluetooth®-enabled audio devices. Designed to blur the lines between a hearing aid and a hearable, the product is already on the market. It’s available through licensed hearing care professionals in black and other colors. The company calls the product a “multifunctional communication device.” They say younger wearers may be more comfortable wearing this stylish product than a traditional hearing aid. Dr. Bishop says the college-aged son of a colleague has been reluctantly wearing hearing aids since he was a kid. He was actually excited to wear the new Virto
Optimized listening Traditionally, hearing aids required manual adjustments for different activities but this device auto-adjusts to help wearers hear clearly in any situation. The hearing aids are meant to be worn 12-15 hours a day. “It stays in your ear all day long and it’s really optimizing whatever listening situation you’re in,” says Dr. Bishop. “Whether you are having a conversation one-on-one, in a group, in a conference room, or if you are having a phone call or streaming content, it’s there to be worn for a full day’s use.” It has up to 16 hearing performance features, including on-board microphones so the devices can work as wireless headsets. Plus, Virto Black wearers can experience up to 10x better-than-normal hearing in noisy situations and over distance by using a Roger accessory to stream the Roger signal directly into both ears. The custom device was honored at the 2020 International CES, including “Best of CES Winner in Accessibility” from Engadget, the “Best Medical Device” by Slashgear, and recognition from Newsweek in their “Best of CES 2020: The Top Tech Products You Can Actually Buy This Year.” ■ Kristen Castillo MEDIAPLANET • 7