Category: Retinitis Pigmentosa

Getting Started When You Are New to Vision Loss: Part One

From: Visually Impaired: Now What?
Categories: Independence , Low Vision , Retinitis Pigmentosa
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Vision loss can happen suddenly or gradually in adulthood. Each eye disease has a characteristic pattern of loss and progression, so the impact is very individual from person to person. Total and sudden vision loss is very traumatic, and it requires immediate interventions and training. However, many eye conditions impair vision slowly and often in stages. This type of progression provides its own challenges. More often adults with … Continued

Retinitis Pigmentosa: Two Stories One Message Part 2

From: Visually Impaired: Now What?
Categories: Low Vision , Retinitis Pigmentosa
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Editor’s Note: February is Retinitis Pigmentosa (RP) Awareness Month. Be sure to read Retinitis Pigmentosa: Two Stories One Message Part 1 in our series. Denying the Diagnosis  As a young teenager, I seemed as normal as my friends; roller skating around the neighborhood, talking to girlfriends over the phone in quiet whispers about boys, badgering my brother … Continued

Book Review: “Seeking Solace: Finding Joy After Loss”

From: Visually Impaired: Now What?
Categories: Book Review , Books , Retinitis Pigmentosa
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Editor’s note:  This review is part of our series on Reading to Enhance Mental Health and Well Being. Forget the old adage that says, “Don’t judge a book by its cover!” The cover of VisionAware Peer Advisor Amy Bovaird’s third book could indeed be judged by its cover, and the assessment would most likely be … Continued

Luxturna, Gene Therapy and Your Inherited Retinal Disease

From: VisionAware Blog
Categories: Gene Therapy , Retinitis Pigmentosa
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Caption: Scene as Viewed by Person with Retinitis Pigmentosa In December 2017, news broke to great fanfare that the FDA had approved the first ever gene therapy for a genetic disease. Luxturna (voretigene neparvovec-rzyl) had been proven to restore vision in people living with inherited retinal diseases. Stories about children seeing their parents’ faces for … Continued

Retinitis Pigmentosa or Choroideremia? Genetic Testing May Be the Only Way to Know

From: VisionAware Blog
Categories: Clinical Trials , Low Vision , Retinitis Pigmentosa
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Retinitis Pigmentosa or Choroideremia? by Mary Hiland When Retinitis Pigmentosa (RP) was the diagnosis for me at age 18 in 1963, I had already been through a battery of tests throughout the preceding 10 years. There was one test, however, that was not even suggested. Genetic testing was considered only for the sake of curiosity, … Continued

From Lighthouse Guild: A New Vision Rehabilitation eLearning Program Specifically for Ophthalmologists

From: VisionAware Blog
Categories: Cataracts , Diabetes and diabetic retinopathy , Education , Glaucoma , In the News , Low Vision , Macular Degeneration , Online Tools , Orientation and Mobility , Retinitis Pigmentosa , Stroke or Brain Trauma , Technology
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Low vision and blindness affect a substantial portion of the older adult population in the United States. Although new research from Johns Hopkins University School of Medicine indicates that the annual number of new cases of blindness and low vision among people aged 45 years and older is estimated to double during the next 30 … Continued

From the American Academy of Ophthalmology: Eye Doctors Must Learn to Pay Closer Attention to Depression in Their Patients with Vision Loss

From: VisionAware Blog
Categories: Cataracts , Diabetes and diabetic retinopathy , Glaucoma , Health , Macular Degeneration , Personal Reflections , Retinitis Pigmentosa , Stroke or Brain Trauma
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At the Annual Meeting of the American Academy of Ophthalmology (AAO) in New Orleans, Louisiana, November 11-14, 2017, Dr. John D. Shepherd, Director of the Weigel Williamson Center for Visual Rehabilitation at the University of Nebraska Medical Center, delivered a powerful lecture on older adults, depression, and vision loss. Dr. Shepherd discussed his own experience … Continued

The Reality and Costs of Gene Therapy for Eye Disease: Who Will (or Can) Pay?

From: VisionAware Blog
Categories: Clinical Trials , Diabetes and diabetic retinopathy , Gene Therapy , In the News , Low Vision , Macular Degeneration , Medical Updates , Personal Reflections , Retinitis Pigmentosa
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As our readers know, VisionAware is committed to providing current and reliable information about eye and vision research that is relevant to adults and older adults, many of whom experience late-life vision loss resulting in low vision. During the past several years, gene therapy has gained traction and offers promise for treating (but not yet … Continued

Researchers Continue to Explore the Potential of Human Echolocation and Acoustics for People with Vision Loss

From: VisionAware Blog
Categories: Diabetes and diabetic retinopathy , Getting Around , Glaucoma , Macular Degeneration , Orientation and Mobility , Retinitis Pigmentosa , Stroke or Brain Trauma
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Vision rehabilitation professionals, including Orientation and Mobility Specialists, Vision Rehabilitation Therapists, and Low Vision Therapists, have long been aware of the need to incorporate sensory input, including echolocation, in their instructional programs. Human echolocation describes the ability of humans to detect objects in their environments by sensing reflected sound waves from those objects. Now it … Continued

H.R.2050: The Medicare Demonstration of Coverage of Low Vision Devices Act of 2017 Needs Your Advocacy and Support

From: VisionAware Blog
Categories: Aging , Assistive Technology , Cataracts , Getting Around , Glaucoma , Health , In the News , Low Vision , Macular Degeneration , Planning for the Future , Public Policy , Retinitis Pigmentosa , Stroke or Brain Trauma , Technology
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The American Foundation for the Blind (AFB) Public Policy Center has announced the reintroduction of federal legislation that seeks to establish a nationwide Medicare demonstration project to evaluate the fiscal impact of a permanent change in Medicare coverage that would, for the first time, provide reimbursement for low vision devices. The AFB Public Policy Center, … Continued

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