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Berichten July, 2021 NEWSLETTERTwo New Classes of Eye DropsDoctor, I Have a Question on In-Home TonometryLiving with Glaucoma : The GilmartinsAPUP, Glaucoma Support Group

Newsletter July, 2021MESSAGE FROM THE PRESIDENTDear Readers,For thirty-six years, The Glaucoma Foundation has worked to identify, encourage, and fund scientic research into the potentially blinding disease of glaucoma. This summer, we selected six new grant proposals for funding, each of which reects the latest innovative directions in glaucoma research. We wish to thank TGF Board Member Ken Mortenson and his wife Linda for sponsoring one of these grants on neuroprotection. Stay tuned for our announcement of a new webinar this summer, a reside chat, and live Q&A with glaucoma patient and advocate Mark Lesselroth and the renowned glaucoma specialist Dr. George Spaeth. Together, they will address some of the common misconceptions about glaucoma, and what we can do, with our doctors, to take charge of our health. Today I’m also delighted to announce the second annual TGF Art Challenge to Celebrate Vision. Last year, artists and donors raised $38,000 through the inaugural Art Challenge. This year, we will match every gift, doubling its impact on the search for a cure. We invite everyone who makes art – young artists, amateur artists, professional artists – and everyone who appreciates their vision, to join us in raising money for sight-saving research. You can enter the Challenge as an artist by sending us a digital image of your original work and encouraging family, friends, and colleagues to support your vision with donations to TGF. We will be awarding prizes of $500 each to the artist who raises the most money and the artist whom I think this should be who our viewers choose as their favorite. We sincerely hope that you will take this opportunity to celebrate vision and advance vision research. Read more about the Challenge in this newsletter and how you can participate as an artist or a donor. We launch on August 16! Until then, enjoy all that this summer has to oer! I thank you for your incredible support and wish you all the best. Elena Sturman

LIVING WITH GLAUCOMAMEET MATTHEW LYMatthew Ly has a daunting summer schedule. From 9 to 5, he’s working at a COVID vaccine center sponsored by the Charles B. Wang Community Health Center In Flushing, New York, which serves many Asian Americans. Then he immediately goes home to prepare for nighttime classes (now online) toward his bachelor’s degree in neurobiology at Baruch College of the City University of New York. Matthew is 24 years old. He was a business student but made a 180-degree turn to science, admitting that his personal history denitely has something to do with that change. Matthew has severe juvenile glaucoma. He was 16 and a junior in high school when he noticed that something was going on with his eyes. “I had really bad headaches that kept getting worse and in class I wasn’t able to see some things.” An ophthalmologist measured his pressures at 48 in both eyes! “When the doctor diagnosed glaucoma and told me what glaucoma was, it was hard to believe her because I was young,” Matthew recalls. “But after a few weeks, I knew this was real as I had lost some vision. I was given drops, but my parents were so worried they took me to the emergency room.” More eye drops followed. Matthew was soon referred to a glaucoma specialist, who has cared for him for many years. After many surgeries – “I can’t even count how many,” Matthew says – his vision has been stable for about ve years. He’s had two trabs in both eyes, laser surgeries also in both eyes and he went to a specialist in Canada to have a MicroShunt implanted in 2016. That helped stabilize his remaining vision. Matthew has also had cataract and corneal replacement surgeries. One of his surgeries caused his pressures to go too low –he now takes steroid eye drops to keep the pressures stable. “I have no central vision out of my left eye and can’t see anything in front of me if I close my right eye. Thankfully, I still have some vision to see centrally through my right eye,” he says. “I lost more than I should have, because what’s dangerous about glaucoma is you can’t tell when its coming. When you know, it can already be too late. “When I was looking for a job in the medical eld – it was a bit hard nding employment given my vision loss. Luckily, the Wang Center took a chance with me and I’m doing fantastically there. I work on the administrative side – at the front desk – interacting with nurses and doctors – and with the patients as well because I’m the rst one they talk to before I send them in.” a year left as a part-time student. But seeing how his doctor interacted with patients, and how medicine can take care of patients, that’s what he thinks he really wants to do. “If I decide to go into research I can go into neurobiology. If I want to take a more hands-on medical route, then I would try to get into a school to become a Physician Assistant (PA). One of my brothers is doing that; another brother is a registered nurse.

Newsletter July, 2021“Don’t get me wrong,” he adds. “There are some days when I feel – ‘why me?’ But some things keep me going. If it had to be someone in my family, then I would want it to be me, because I feel I can handle this. Life happens – you play the hand you’ve been dealt. “Relative to other glaucoma patients, I can still function without any help. I have my computer and an iPad to take notes. I can still read a book. I still have something of a central vision and that is what keeps me going. “It takes time for a person to come to terms with this. Of course, I have my bad days. But then I think If I hadn’t had this, I wouldn’t have met all the wonderful people I have met, including my doctors who have helped me.”

Low-Tech/ Hi-Tech Webinar Oers Low-Vision ResourcesOn May 27, TGF President Elena Sturman hosted a webinar featuring a panel of low-vision specialists and patient advocates who provided a wide range of valuable techniques and assets to improve home and work life for those with low vision. Delaram Shirazian, OD, Assistant Clinical Professor at SUNY College of Optometry, introduced some high-tech resources for low vision such as cell phone applications, wearable devices, and implantable devices. She pointed out that many people now have access to technology but may not know about available free apps for their smartphones. Two examples are Seeing AI for iPhones only, and Be My Eyes, for iPhones and Androids. Seeing AI can describe nearby people, text, and objects. Be My Eyes connects blind and low-vision individuals with sighted volunteers from all over the world who lend their eyesight and support to help with tasks such as reading labels, navigating a new place, and nding a dropped object. Another panelist, Olaya Landa-Vialard, PhD, is Director of the APH ConnectCenter, (www.connectcenter.org). VisionAware, a part of the APH ConnectCenter, provides reliable free information for all ages on virtually every aspect of vision loss. Resources include A Guide for People New to Vision Loss and A Guide to Vision Loss for Family and Friends, blogs and more, including a Directory of Services. This database, searchable by state, has contact information for over more than 2,000 organizations and agencies that serve people who are blind or visually impaired. To learn more about their services, browse the website www.visionaware.org, call 1-800-232-5463, or email connectcenter@aph.org. Mika Pyyhkala leads the nationwide digital accessibility team at Envision’s new Workforce Innovation Center (www.workforceforall.com).The team advises organizations on digital accessibility of websites, mobile applications, kiosks, documents, and other digital assets. The Workforce Innovation Center also operates an Accessible Products Hotline, 316-252-2500 provides guidance on the accessibility and usability functions of top consumer products used in the home and oce. With one phone call, consumers with vision loss have access to professional advice and lists of products that t their unique accessibility needs. Panelist Andy Burstein is the CEO and co-founder of Accessible Pharmacy Services for the Blind, a comprehensive home delivery pharmacy service currently licensed in 31 states. Accessible Pharmacy’s high-tech, low-tech, and no-tech packaging, labeling, and concierge solutions are free for patients. At no cost, patients can try a combination of solutions (e.g., talking labels, large font labels and Braille) every month until they identify the ones that best assist them with their medications. Packaging options include various bottle packaging options, a disposable pill organizer and individual pill packs. Call 215-799-9900 to speak with a pharmacist. Over years of slowly losing his sight, award-winning documentary lmmaker and producer Joseph Lovett (“Going Blind: Coming Out of the Dark About Vision Loss”) has become an important voice for public awareness of blindness, vision loss, and vision rehabilitation. For individual or group viewings of his lm, go to goingblindmovie.org. “Vision loss requires adjustment, not a quick x,” he says. “It requires time, patience, and support. There are skills and attitudes to learn that can make our lives easier. You have to adjust to what is, not to what you have lost.”

Newsletter July, 2021 SOME DO’s AND DON’Ts FOR SUMMER ACTIVITIESMaintaining an active lifestyle with a daily routine of exercise is a good prescription for anyone, including people with glaucoma. There is evidence that aerobic exercise (e.g., brisk walking, running, biking) performed on a regular basis can lower IOP. Exercise may also improve blood ow to the retina and optic nerve. If you need an incentive, remember once the aerobic exercise stops, your IOP will return to its earlier level. But before embarking on a new exercise regime, always discuss the pros and cons with your doctors.There are some caveats. Upside down yoga positions, such as handstands or shoulder stands, scuba diving and other activities where you invert your body should be avoided, because they can raise IOP. Exercises in which you inhale and hold your breath are also not recommended.Be sure your sunglasses lter out 100 percent of UV light. And always wear protective glasses when doing yard work or playing contact sports. Wear goggles when swimming – large goggles that don’t press too hard on the orbit of the eye are recommended. It’s especially important for individuals who have had trabeculectomy surgery to wear wrap-around goggles when swimming or kayaking as infection in post-trabeculectomy eyes can be serious. Best to stick with sea water or a pool – fresh lake water has more infectious capabilities. If you suspect the water quality, don’t take a chance. Let caution be the rule. When patients with pigmentary dispersion syndrome or pigmentary glaucoma jog or participate in other jarring ball sports, they may develop an exercise-induced release of pigment from the iris and possibly an associated spike in IOP. These patients need to check with their ophthalmologist, who may want to evaluate them before and after such exercise.

The Peaks and Valleys of IOPWhile elevated intraocular pressure (IOP) is the most commonly recognized modiable risk factor for glaucoma, the role of IOP uctuation throughout the day and night is being studied as a factor in glaucoma disease development and progression and management. IOP varies considerably during the 24-hour cycle. A single eye pressure measurement at any given time on any given day in the doctor’s oce is a snapshot of what the eye pressure truly is on average. Multiple measurements at dierent times over a period of days or weeks can monitor how great the range of uctuation is between visits and help doctors manage their patients’ glaucoma. IOP uctuations have internal causes or can develop from external factors. Internally, IOP can depend on the balance of aqueous humor production, on how easily aqueous humor leaves the eye, on the pressure in the veins on the surface of the eye, and the uveoscleral outow – a secondary pathway for aqueous humor. IOP also uctuates because of body position, time of day (peaks at night, troughs during the day), blood pressure and the related concept of ocular perfusion pressure, stress or pain levels, water consumption, and more. Some examples: – Pressures can increase or decrease depending on the patient’s position in the chair -- the best is a neutral position. Regarding body positions, bending one’s neck forward or backward, lying down, bending over, all can cause IOP to rise. – Studies have shown that peak IOP occurs at night or in the early morning hours in two-thirds of glaucoma patients. IOP has been shown to increase by 3 to 4mm Hg when a patient is lying at, face-upward.– The force used to bring blood into the eye is the ocular perfusion pressure - a variable that can be considered as the dierence between the blood pressure and eye pressure. Factors that cause IOP to rise will have an eect on lowering perfusion pressure; factors that lower blood pressure also will result in lower perfusion pressure. In situations where blood pressure drops and eye pressure increases overnight, there is greater risk for glaucomatous damage. – Drinking a large volume of water quickly causes pressure to rise for a short time – up to 6mm Hg within ve minutes. – An increase or decrease in stress causes hormonal changes that can push IOP levels up or down. And the list goes on. While doctors can measure eye pressures at dierent times of day over several visits, the availability of 24-hour IOP information remains a goal. There are devices like smart contact lenses and implantable sensors in the research and clinical trial pipeline. The iCare HOME tonometer is the rst device available to patients for measuring intraocular pressure at home. Although very expensive, there are rental opportunities. Visit MYEYES.net

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