Learn About Vision Loss This World Sight Day

People living with a rare neuroimmune disorder understand how critical a quick and accurate diagnosis can be. They can seek appropriate rehabilitation and treatment for the best outcomes possible after a rare neuroimmune diagnosis. This can be particularly important for individuals with Optic Neuritis (ON). ON is an inflammatory demyelinating condition of the central nervous system that results in the loss of vision and is associated with eye pain, loss of color vision and visual field deficits. While ON can occur on its own, it is often part of Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody Associated Disease (MOGAD), Multiple Sclerosis (MS), or Neuromyelitis Optica Spectrum Disorder (NMOSD). ON is typically monocular (affecting one eye), though it can also affect both eyes sequentially or simultaneously.

During the 2021 Rare Neuroimmune Disorder Symposium (RNDS), Dr. John Chen gave an overview of Management of vision after optic neuritis, including an example of a typical case of ON, the associated symptoms and tests, and treatment options. Dr. Chen described the experience of ON related to MS, NMOSD, and MOGAD. He explained, “The outcomes are much different. With MS, only 3 percent end up legally blind, NMO can be up to 50 percent, and MOGAD is typically 5 to 10 percent.” However, the accurate diagnosis for MS, NMOSD, and MOGAD is crucial because the treatment options can vary and have different effects on those with these disorders. Learn more and listen to the rest of the talk in the Resource Library.

Whether a person experiences vision loss due to ON, NMOSD, MOGAD, or another cause, as much as 90% of vision loss is preventable or treatable. October 13, 2022 is World Sight Day, a day when we help unite the global community to focus attention on eye health. Today, we join the International Agency for the Prevention of Blindness and remind everyone to #LoveYourEyes while remembering some of the rarer causes of vision loss.

Beyond understanding the causes and treatments for vision loss, it’s important to understand the ways that vision loss and blindness can impact everyday life and how to cope. During the 2020 RNDS, Deb Nikkila, MOT, OTR/L said, “Vision loss itself is a traumatic life event regardless of what causes it. And when your vision deteriorates so rapidly it can really evoke some panic. The fact that vision affords us the ability to perceive the environment instantaneously could make us feel like there’s a barrier between us and the world when we have a vision loss. For that reason, as an occupational therapist, I feel it’s important and valuable to have an awareness of how, globally, vision loss can impact your daily life.”

Managing Visual Issues 

Amanda Aaron, OTD and Deb Nikkila, MOT, OTR/L joined SRNA for an Ask the Expert podcast on “How to Manage Visual Issues.” These experts shared information about low vision rehabilitation and resources that are available for people experiencing visual issues. Amanda and Deb explained the ways that occupational therapists, and specifically low vision therapists, can help a person learn adaptive strategies and skills to help someone manage their visual conditions: “The focus is on treating function. It’s on treating, ‘How can we use your vision to the best of its ability? How can you learn to still engage in your world?’ So, to not feel discouraged to go look for a low vision assessment, because it’s actually an avenue of resource, not simply a verification that your vision has declined.”

The conversation continued with an overview of resources for those with visual problems or people who are newly blind. Those living in the United States should contact their local Department of Vocational Rehabilitation or Department of Health and Human Resources. Other groups like the National Federation for the Blind or the Lighthouse for the Blind can offer support and information. Visit the SRNA Resource Library to learn from the rest of the discussion – from flare-ups and symptoms to treatments and assistive technology and more.

Air Travel With a Guide Dog

Recently, Dr. GG deFiebre of SRNA was joined by Andrea Mitchell of the MOG Project for an Ask the Expert podcast on “Air Travel with a Disability: Blind and Guide Dog Travel.” Andrea has had a relapsing form of MOG antibody disease since October 2011 and she lost sight in both of her eyes due to a lack of aggressive treatment over the two years it took to find the right diagnosis. She and her husband James have a retired guide dog named Newcastle and a yellow lab named Indy who has been Andrea’s new guide dog since October 2021. 

During the conversation, Andrea offered advice on how to prepare for air travel with a guide dog, maneuvering through security, and the rights of passengers with disabilities through the Air Carrier Access Act. At the beginning of the trip, Andrea called a guide dog school for their tips and a verification letter confirming her guide dog was a professional to provide to the airlines. Two additional forms must be submitted to the Department of Transportation in advance, along with other calls and arrangements with the airline. 

Andrea emphasized the importance of preparation and self-advocacy: “It’s about making sure that you know everything as much as possible ahead of time, all the information, gathering all of that, calling the airlines, making sure that you’re doing your homework – then you’ll have a smoother experience. And then of course also be prepared for the unexpected. You could have an airline giving you a hard time and not accommodating you. Then you might need to ask for someone else to come into the picture and make sure that your rights are not violated. So, there’s a lot that goes into it and I think just a lot of preparation ahead of time is the key.” 

The Seeing Eye offers tips for air travel with a guide dog, including travel kit essentials, self-advocacy and knowing your rights, and understanding what to expect. For passengers with disabilities, it’s helpful to understand your rights through the Air Carrier Access Act.