It’s a Race: Vision Loss vs Hearing Loss

From Diagnosis to Treatment One Woman's Story of Living with Geographic Atrophy

My Life With Geographic Atrophy

👩‍⚕️ By Margret Krakauer, as told to Keri Wiginton

📚 Have you ever thought of life as a race between losing your vision and losing your hearing? Well, that’s exactly how Margret Krakauer, a remarkable 79-year-old woman, describes it. Margret is no ordinary person. She’s an artist, a writer, and a fierce advocate for those living with age-related macular degeneration (AMD) and geographic atrophy (GA). Let’s dive into Margret’s story and explore the challenges she faces, the support she receives, and the hope she holds for the future.

Life Through My Eyes 👀

Despite dealing with vision loss, Margret continues to live a vibrant and independent life. Cooking is no problem for her, although reading menus in dimly lit restaurants can be a challenge. But with the help of technology and her loving husband, she finds ways to overcome these hurdles. Enlarging menus on the computer or seeking assistance from her husband allows her to make dining choices with ease. Margret also enjoys reading books, both e-books and print articles, though she requires ample lighting to see clearly.

As her condition progresses, Margret encounters difficulties with color perception and occasional disappearing letters on the right side of her vision. These challenges may be disconcerting, but Margret finds ways to cope. And like all of us, she has good days and bad days. Some days, her eyes tire more quickly, and reading becomes a challenge. But Margret accepts that and chooses to relax by watching something entertaining on TV instead.

Where Support Shines 💡

Margret is incredibly fortunate to have her husband by her side for over 53 years, providing unwavering support. They navigate her vision loss together, tackling tasks such as cleaning her hearing aids or threading needles when her acuity wanes. Her husband takes care to guide her on walks, ensuring she notices steps, stones, and other potential hazards. And in the darkness, he remains a steadfast companion, offering a hand to hold.

However, support isn’t limited to her husband alone. Margret also finds solace and a sense of community through her Facebook group called “Our Macular Degeneration Journey.” In this group, she connects with others facing similar challenges and learns from low-vision specialists, optometrists, and occupational therapists. Margret cherishes the kindness that flows through the group and values the knowledge she gains from discussions. It was through this community that Margret first heard about the breakthrough treatments on the horizon, breathing new life into her hope for the future.

Hope Illuminates the Path 🌟

Margret’s retina specialist believes she is an ideal candidate for the newly approved drug, pegcetacoplan (Syfovre) injection, designed to treat GA. As she notices more blind spots in her left eye, getting started on the treatment is important to slow down the progression of the disease. Being almost 80 years old, Margret knows she is more prone to faster progression compared to younger individuals. The fear of losing further vision in her right eye motivates her to take action.

But Margret’s hope extends beyond her personal journey. She acknowledges the efforts of researchers studying this disease and the potential for more advances in the future. With optimism and determination, Margret looks forward to a life where vision loss does not define her. She eagerly anticipates the positive impact the new treatment may have and continues to engage with her community, always seeking ways to not only adapt but thrive.

🌈 Margret’s story reminds us that even in the face of challenges, there is room for hope, support, and meaningful connections. So, don’t let the hurdles of life overshadow the brightness that still illuminates our path. We can all learn from Margret’s resilience and embrace each day with gratitude and determination.

Q&A: Answering Your Burning Questions

🤔 Q: What are some other treatment options available for age-related macular degeneration (AMD) and geographic atrophy (GA)?
👩‍⚕️ A: While pegcetacoplan (Syfovre) injection shows promise as a treatment for GA, several other treatment options are available for AMD. These include anti-VEGF injections, photodynamic therapy (PDT), and laser surgery. However, it is important to consult with your healthcare provider for a proper evaluation and personalized treatment plan.

🤔 Q: How can I support a friend or family member who is facing vision loss?
👩‍⚕️ A: Empathy, understanding, and patience are key when supporting someone experiencing vision loss. Offer your assistance in daily tasks, help with accessing resources or technologies that improve accessibility, and most importantly, be there to listen and provide emotional support. Remember, small gestures can make a significant difference in their lives.

🤔 Q: Can lifestyle changes or a specific diet slow down the progression of AMD or GA?
👩‍⚕️ A: While diet and certain lifestyle changes may support overall eye health, there isn’t a specific diet proven to halt or reverse the progression of AMD or GA. However, consuming a balanced diet rich in antioxidants, vitamins, and minerals can contribute to maintaining good eye health. Regular eye check-ups and following your healthcare provider’s recommendations are crucial.

🤔 Q: Are there any assistive technologies or tools available to help individuals cope with vision loss?
👩‍⚕️ A: Yes, there are various assistive technologies designed to improve independence and accessibility for individuals with vision loss. These include screen readers, magnification software, text-to-speech devices, braille displays, and smart home devices. Consult with low-vision specialists or occupational therapists who can guide you in selecting the most suitable assistive technologies for your specific needs.

🤔 Q: What ongoing research and advancements are being made in the field of AMD and GA?
👩‍⚕️ A: The scientific community is dedicated to advancing our understanding and treatment options for AMD and GA. Ongoing research focuses on developing new drugs, gene therapies, and stem cell treatments. Clinical trials are constantly being conducted, offering hope for future breakthroughs. Stay informed about the latest research by following reputable sources and engaging with relevant communities.

🎉 Share Your Journey and Spread Hope 🌼

Margret’s story has undoubtedly touched our hearts and inspired us to approach life’s challenges with resilience. If her story resonates with you, don’t hesitate to share it with your friends and family. Let’s spread hope and support for those living with vision loss. And remember, a small act of kindness can brighten someone’s day, so be the light in someone’s life.

🌐 References:The National Eye Institute – Age-Related Macular DegenerationAmerican Macular Degeneration Foundation – Geographic Atrophy

📸 Image Source:fstop123 / Getty Images

Article updated and enhanced by [Your Name], MD, PhD