#47 Living with NAION: Rachel Schreiman’s Journey Through Vision Loss and Advocacy

In this powerful and educational episode of It Happened To Me, we sit down with Rachel Schreiman who turned her personal struggle with vision loss into a mission to support others. Rachel shares her story of resilience after experiencing two episodes of Non-Arteritic Anterior Ischemic Optic Neuropathy (NAION), a rare and debilitating eye condition caused by insufficient blood flow to the optic nerve. These episodes left her with significant central vision loss, but instead of giving up, Rachel embraced a new path.   Rachel Schreiman is a CPA and musician who holds an MBA from the University of California, Irvine. In 2019 while working as the Controller for a trade association in Washington DC, she suffered two episodes of Non-arteritic anterior ischemic optic neuropathy (NAION), rendering her legally blind with significant central vision loss. After receiving rehabilitation care and training she started a new "career" devoted to others with low vision. She now works for Dr. Suleiman Alibhai OD, a low vision rehabilitation optometrist, and as a Resource Navigator for the Prevention of Blindness Society of Metropolitan Washington (POB). Both of these positions allow her to give back to others with low vision by sharing information about resources and demonstrating how to use many of the devices, assistive technologies and applications available that allow users to live full and independent lives.   Key Topics Discussed:   The Onset of NAION:  Rachel recounts the initial episode of NAION in 2019, the symptoms she experienced, and her journey to diagnosis. She describes NAION as a "stroke in the eye," explaining how lack of blood flow to the optic nerve led to significant vision loss.   Risk Factors and Triggers for NAION: Rachel discusses possible risk factors, such as sleep apnea and cardiovascular issues, which can contribute to the development of NAION. She shares insights into lifestyle adjustments and precautions she now takes to help manage her health.   Navigating a Second Episode:   Five months after the first NAION episode, Rachel suffered another in her other eye. She reflects on the impact of this second event, the rapid response from her medical team, and the steps she took to prepare for further adaptation to vision loss.   Diagnosing and Treating NAION:   Rachel describes the challenges of diagnosing NAION, which can be easily mistaken for other conditions such as multiple sclerosis, brain tumors, or stroke. She also explains the diagnostic process and the types of specialists who are essential for accurate diagnosis and care.   Adapting to Vision Loss: Rachel opens up about the difficult decision to stop driving and the profound impact it had on her independence. She shares the changes she made in her home and daily routines, along with the support she received from her husband and family, which helped her navigate life with low vision.   Coping Strategies for Low Vision:   Rachel reveals the practical and emotional strategies she uses to cope with vision loss, from using assistive technologies to finding new hobbies and ways to stay connected with her passions.   Advocacy and Empowerment in Low Vision Care:   Through her roles with Dr. Alibhai and the POB, Rachel describes her work in educating others about low vision resources, providing hands-on training with assistive devices, and guiding patients and their families through the journey to independence. She also highlights the services POB offers for those with low vision and encourages listeners to seek support early in their vision loss journey. Resources Mentioned:   - Episode 24 with Dr. Andrew Carey – For more on optic neuropathies, including NAION, check out our conversation with neuro-ophthalmic specialist Dr. Carey. - Episode 27 with Prevention of Blindness – Learn more about POB’s programs and resources for individuals with low vision on POB’s website.  - Assistive Technology Resources – Recommended apps and devices for managing life with low vision: Seeing AI, VoiceDream, BeMyEyes, Aira.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.