Browse By Topic: Retinitis Pigmentosa

Retinitis pigmentosa (RP) is part of a large group of hereditary retinal conditions or dystrophies that cause progressive vision loss. Learn more about retinitis pigmentosa diagnosis and research, as well as other eye conditions that can cause low vision: macular degeneration, macular hole, diabetic retinopathy, cataracts, and glaucoma. You can also find helpful tips and techniques for everyday living skills and safe indoor movement and outdoor travel, along with helpful products and low vision devices. Register to receive alerts and news relating to vision loss, including the latest updates in medical research.

Dave Steele Performs at the Manchester Cathedral

Caption: Nave in Manchester Cathedral, England by Michael D. Beckwith [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons Editor's Note: During this time of holiday celebrations, Dave Steele brings us his poignant performance of his poetry reading at the Manchester Cathedral in England. Performance at the Manchester Cathedral By Dave Steele I was recently invited to speak at an event by a local


Self-Publishing: A Pathway to Sharing Your Story

Compiled by Maribel Steel   Editor’s note: This is part one of a series of posts by VisionAware peers who want to share their experience and advice on the topic of self-publishing. We begin the series with Dave Steele, who has discovered his voice through writing poetry. He offers tips on what he has found to be keys to success on his pathway to self-publishing as a person who is visually impaired as a result of


Father's Day: "Daddy," a Title That Makes Me Most Proud

There are many things I am proud of in my life: my career as a singer, traveling the world from the age of 18 while getting paid to do something I love. I'm proud of the work I have done in the last three years raising awareness and supporting people with Retinitis Pigmentosa (RP) and Usher Syndrome through my poetry and books. But of all the things I've been in my life, singer, author, poet, the title I'm most proud of is "Daddy."


Raising Awareness About Living with Low Vision Through Poetry

Editor's note: In today's post, Maribel interviews Dave Steele, a visually impaired poet and song writer. We first learned of Dave and his inspiring poetry during Valentine's Day when he shared a poem on retinitis pigmentosa. Learn more about Dave by reading his personal story. Raising Awareness About Living with Low Vision Through Poetry <img src="http://www.afb.org/image.asp?ImageID=8128" alt="Dave Steele holding his book, Stand with Me RP"


Amy Bovaird Interviewed About Her Book, "Cane Confessions: The Lighter Side to Mobility"

Amy Authors Second Book on Mobility Editor's note: Beckie Horter, peer advisor, conducts this interview of Amy Bovaird about her second book. Cane Confessions is the second book in peer advisor, Amy Bovaird's, mobility series. The first is Mobility Matters: Stepping Out in Faith. It follows the journey of her orientation and mobility training. In this latest book, Cane


International Perspectives: Living and Working in Siberia As a Person with a Disability

Editor's note: This is the 3rd part of our series on the International Day of Persons with Disabilities. Be sure to read Part 1 on useful tips when you meet a person with vision loss and Part 2, "Speak to Me.". And stay tuned next week for Maribel Steel's post on "accepting life as it comes." by Elizabeth Sammons, Peer Advisor "Relax every muscle right now, or you’ll break some bones," the voice in my head bounced through my body as I started


8 Things I Wish People Knew About Going Blind From a Degenerative Eye Condition

Today's blog is from Joy Thomas of Double Vision Blog. Joy and Jenelle are identical twin sisters with retinitis pigmentosa (RP) who hope to share their perspectives, experiences, and challenges with vision loss. 8 Things I Wish People Knew About Going Blind From a Degenerative Eye Condition It usually occurs slowly. While there are some people who go blind overnight or in a matter of days, such as with detached retinas, following eye surgeries, or with


Going Back to School and Succeeding with a Dual Disability

Steven at graduation in his cap and gown Here is an in-depth interview with VisionAware peer advisor, Steven J. Wilson, who shares his life in how he went from having a successful career working on yachts to accepting his dual sensory disability as a deaf/blind person. He has recently completed a Liberal Arts degree program of studies while also raising his daughter as a single dad. His secret? It’s all about changing attitudes and addressing others with a smile! Being Deaf-Blind


The Bookshelf: Reading Books on Blindness and Learning About the Experiences of Others

Reading Books on Blindness Reading is still a pleasure I enjoy every day. The beauty of talking books is that I can multi-task as I listen to my latest selection on BARD. In fact, I can carry around my iPhone filled with downloaded books from my ambitious reading list and listen as I fold clothes, cook, walk the dogs or work


A Mountaintop View of the World in Spring

As spring moves swiftly into her delightful season of wild flowers and longer sunny days, I am reminded how touch allows me to see as my world goes out of focus with Retinitis Pigmentosa (RP). But my desire to see through blind eyes is kept alive by traveling to foreign shores…or in this case, a mountain top! Climbing That Mountain Driving through the villages of the Auvergne region of southern France, vague splashes of colour whirl past my view. The Top Gear team are on a mission – we have a mountain to climb. My partner, Harry pulls up in the car park at the


Visit Guggenheim New York Without Having to Get out of Your PJ's

Take a Tour With a Difference For those of you who enjoy wandering through art galleries, going on audio described tours and keeping in touch with the art world, guess what you can do over the holiday season without even having to get out of your comfy warm PJ's? Take an online audio described tour at the Guggenheim in New York! An Experience


Cataract Surgery Can Be Beneficial for People with Retinitis Pigmentosa: My Experience

Editor's note: This month is Cataract Awareness Month. Be sure to read this post and all the other important information mentioned in this post about cataract surgery and what you need to know. The Diagnosis I have Retinitis Pigmentosa (RP) and two years ago my retinal specialist noted on a regular checkup that I had developed cataracts on both eyes. The cataracts were sitting right in the center of my only remaining window of vision. They were the type of cataracts that are commonly found in RP patients. About 50% of patients with RP develop them. My doctor explained that


How to Make Your "Home Sweet Home" Safe

Home Safety Month There is nothing so comforting as our "home sweet home" to return to after being away for a few hours, a day or a vacation. But often, it is our homes that can pose the greatest risks to our safety especially if you are blind or visually impaired. At home, we take off our emotional armor to relax, our dog guides are off duty. Our sighted family can even forget we can’t see and are in relax mode too. Distractions abound and before you know it, a dining chair was left out from the table, a cupboard door left ajar and a glass of water was perched right where you could knock it from the bench to smash on the floor. Accidents do happen – but why not eliminate


Seeing Colors With My Brain Versus My Eyes

Healthy Vision Month Editor's note: May is Healthy Vision Month. Although Maribel has retinitis pigmentosa, a group of hereditary retinal diseases for which there is presently no definitive treatment, in this post she discusses her appreciation of vision. She encourages you to make your eye health a priority during this month. Take the first step by getting a dilated eye exam. And find out more steps you can take to preserve vision. <img


How I Accepted the White Cane

Editor's Note: This is the first in a series this week of posts on the white cane. Be sure to stay tuned for the rest of this series. Accepting the White Cane There comes a time when it just makes sense to use a white cane when you are losing your vision. Most of us resist this rite of passage, fearing the stigmas, myths, and images associated with the “dreaded white cane.” Something Awful Had to Happen In my case, something awful


What Do You See?

A Question That is Difficult to Answer As a person with a visual impairment, I am asked this question many times and it is difficult to answer. Often, I do not know what I see…for what I am looking at does not declare itself readily. The world through my eyes is a shadowy, ill-defined place with uncertain shapes and colors. I am losing the ability to detect light and color in increments as if the world around me is a watercolor scene fading into the canvas. At times, I see nothing, only darkness and danger; other times the world is brilliantly washed in diffuse light and a soft blurriness which is almost beautiful… like a Monet…


From Cataract to Accomplishment

by Maribel Steel Sometimes I get the feeling that we are meant to meet certain people in our lives or be in a specific place at a specific time – even though we don’t quite understand why. Getting a Diagnosis Twenty years ago, when my many roles included being a wife and mother, a care-giver to my elderly mother-in-law, a midwife to a menagerie of farm animals and the secretary to our family business, the cloudiness of my vision had become disturbing. The diagnosis of Retinitis Pigmentosa (RP) had been a part of our lives for several years but the constant haze as if looking out from behind a foggy windscreen obscuring vision was getting worse. It was time


Musings of a Visually Impaired Mother

If My Mom Can Do This, I Can Do It Too I come from a long line of mothers. Women have been birthing babies since the beginning of time. You know that excruciating moment during childbirth when you are screaming “I can’t do this!" and then you dig deep and discover you can after all? I told myself in that moment "If my mom could do this seven times (yes, seven!), then I can too!" And then when the nurse placed my squalling, slimy, bundle of joy in my arms for the first time, I suddenly realized the labor was not even the hard part of being a mother. Learning I Was Expecting My First Child I learned that I was expecting my first child from a neurologist, who was working me up for some unknown vision problem. The news was dulled by the uncertainty of my


Adjusting My Career to Vision Loss

Editor's note: Welcome Audrey Demmitt, new VisionAware Peer Advisor. A Career I Dreamed Of The day I graduated from the University of Arizona in 1983 with a nursing degree was a personal triumph. I looked forward to a career I dreamed of since childhood. I was certain I had found my life’s passion in nursing. My future was full of promise and excitement. Then at age 25, a vision exam turned everything upside down. The diagnosis was retinitis pigmentosa and my future became uncertain. Continued to Work After Diagnosis A long journey followed as I struggled to


Living with Diabetes

Facing Diabetes and Its Complications "You can eat all the ice cream you want in heaven." So began the eulogy for my friend Sally who had died of diabetic complications two days before. The minister's talk was aimed particularly to Sally's six year old son on the front row of the chapel. I cringed because I have diabetes too. My feelings were exactly the same when my doctor informed me that I had the scary disease six years ago. I loved sweets, still do, but I thought then that they would be available to me only in the next world. That's what everyone says: "No sweets." I knew that I wanted a different answer. Educational Seminar I attended a day-long diabetes educational


Older Alabamians Speak Out About the Importance of Specialized Services for Older Persons with Visual Impairment

Anthony: OASIS Got Me Over the Hump Anthony is 78 and has Retinitis Pigmentosa. Although he has been visually impaired all of his life, it was not until he lost his dog guide in April, 2012 that he realized that he needed vision rehabilitation services to build his confidence and independence. He found out about about OASIS (Older Alabamians System of Information and Services) from a friend. Jane, a


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