It is not difficult to imagine how vision loss could impact one’s life in a myriad of ways. You might think that living without vision would be cause for losing hope. The truth is quite the opposite, and we can see examples of this all around us. Doctors diagnosed Danielle Umstead with retinitis pigmentosa when she was thirteen, a degenerative eye condition that causes complete blindness over time. Despite being blind, her father invited her to go skiing in 2001; she fell in love with the sport and the activity gave her life new promise.Umstead would be put to the test again, developing multiple sclerosis in 2010. Seventeen years after first losing her vision, she is competing in the Winter Paralympics starting March 9th. A remarkable story of perseverance in the face of blindness.
Please share with us your remarkable story in spite of blindness.
"I'm A Paralympic Alpine Skier, And I Don't Let My Blindness Hold Me Back"
A national clinical research trial led to some promising findings regarding storing corneal donor tissue. Until now, corneas could only be stored for seven days or less, if surgeons are going to use the tissue. The study found that the cornea, our eye's clear outer covering, is still viable for transplant after 11 days of storage. The findings appear in JAMA Ophthalmology.
Thanks to modern medicine the average American live longer than their ancestors. However, that doesn’t mean that a person’s body is going to function normally. In fact, eye diseases and vision loss are a significant public health concern; 4.2 million Americans ages 40 and older are visually impaired. Experts project that visual impairment will affect 7.2 million by 2030. As many as 5 million will struggle with low vision.
On the 28th of January, the 43rd Annual Ski for Light International Week came to a close in the Sierra Nevada mountains. Each year, the event works with visually impaired and mobility-impaired people, giving them cross-country ski lessons. Ski for Light has over 115 able-bodied volunteer guides training more than 250 attendees.
Braille code has helped countless people living with vision loss access knowledge for nearly 200 years. Without the 64 character reading and writing system, it’s hard to say how blind people would have fared in life; although, one can imagine not all that well. Today, computers and software open the doors to education for those experiencing vision loss; begging the question, is the raised dot matrix still required?
Anyone who has tried their hand at golf knows that it’s a challenging sport. People play the game for decades and still struggle to finish a round under par. Imagine, then, trying to play the game of golf blind, pretty difficult to picture, right? However, there is at least one man who’d disagree, four-time American blind golf champion Mario Tobia. The pro blind golfer has a degenerative condition called Retinitis Pigmentosa, an eye disease in which the back wall of the eye (retina) is damaged.
Trachoma, a bacterial eye infection, is the world’s leading cause of preventable blindness. The most significant number of people affected by Trachoma-related blindness live in Ethiopia. Despite the fact that the blinding eye infection is easily treatable with antibiotics and simple surgery, the condition has been neglected. Experts say that the disease is not new, scientists found evidence of the bacteria in Egyptian mummies. The World Health Organization set a global target to end Trachoma cases by 2020
Seven out of 10 people who are legally blind are unemployed and 50 percent battle with depression. TIME Magazine voted eSight as a Best Invention of 2017, electronic glasses which can give people living with blindness the chance to see. The company pledged to help make blindness history by 2020. You can see the first time people see with the help of eSight, at MakeBlindnessHistory.com
Between 2010 and 2050, the National Eye Institute estimates that people affected by eye disease that can cause vision loss will double. Such conditions include age-related macular degeneration (AMD), cataracts, diabetic retinopathy, and glaucoma. However, there are several steps you can take to protect your eyes from experiencing problems, such as having regular eye exams.
Chris Visions, an artist who is known for Dead Letters and Gwen-Spider, is blind in his left eye due to Keratoconus, a progressive eye disease. Visions will undergo cornea transplant surgery at the end of the month. Keratoconus runs in the family; Chris’ father has had three cornea transplants for blindness.
ROP (retinopathy of prematurity) is a blinding eye disorder that the National Eye Institute says affects as many as 16 thousand preemies in the U.S. each year. Babies who are born prematurely are at risk of vision loss; Stevie Wonder was six weeks early, and it cost him his vision. Dr. Michael Chiang is an advocate for early screening and ROP treatment, fighting against two common obstacles to early diagnosis: accessibility to experts and a lack of standardized tests. Dr. Chiang uses an eye injection called Avastin in ROP cases:
Warren Moore was born with a condition called Coloboma, which involves underdevelopment of the retina and iris. In his late 30’s, he decided to quit teaching music after his vision began to deteriorate due to cataracts. Moore went on to start a catering company and opened several successful restaurants with his wife, Georjean. In spite of his blindness, Moore shows that following your dreams is possible.
Neil Harbisson, 33, is color blind but that doesn’t prevent him from being an artist. He can compensate for his achromatopsia, or complete color-blindness, through the use of an antenna that allows him to "hear" color through vibrations in his skull. Harbisson's implant gives him the ability to "see" in UV.
Experienced climber Brian Dickinson reached the summit (29,000 feet) of Everest just before he went “snow blind,” a form of photokeratitis that is the result of UV rays reflected off ice and snow. Circumstances led to him soloing the climb; if not for a series of miracles Dickinson, would not be alive today. It would be a month and half before Brian regained his eyesight.
There are coffee drinkers and tea drinkers, but it turns out that latter may be at an advantage—at least when it comes to vision loss. A new study indicates that daily caffeinated tea drinkers may be at a reduced risk of developing glaucoma; a group of diseases which are harmful to the optic nerve, resulting in vision loss and blindness. Millions of people worldwide suffer from glaucoma-related blindness.
There were an estimated 285 million people worldwide with diabetes in 2010, according to the journal Eye and Vision. More than one-third of people with diabetes have signs of diabetic retinopathy (DR), and a third of such people struggle with vision-threatening diabetic retinopathy (VTDR). A potential way of stalling or even reversing diabetes-related blindness has shown promise in animal models by suppressing levels in the eye of the protein that is believed to cause vision loss.
Most blinding diseases are the result of damage to the photoreceptors in the eyes. Photoreceptors convert light into an electrical signal that is sent to the brain, thus creating an image. Promising new research suggests that stem cells can treat blinding diseases. Doctors can place a stem cell in the deep layers of the retina, creating new photoreceptors. Researchers have successfully used stem cells to treat animal models with retinitis pigmentosa and macular degeneration.
Edward Henry Greb, aka "The Pittsburgh Windmill," was the American light heavyweight boxing champion from 1922 to 1923 and world middleweight champion from 1923 to 1926. While he was a remarkable boxer (298 fights in 13-years), he achieved his championships despite being blind in his right eye. A boxing injury in 1921 resulted in a retinal detachment and blindness, a fact that he hid from the public. “Greb was one of the greatest fighters of all time," said Tommy Loughran, one of Greb’s opponents.
Christopher, a young boy with the voice of an angel, came into this world with the deck stacked against him. His aunt and uncle adopted him after a stint in foster care. Christopher was born at 26 weeks with cocaine in his system. He received oxygen for 100 days, but his eyes were unable to adequately develop—which led to retinal detachment in both eyes. Being blind and autistic made it challenging to communicate, so his adoptive parents hired a music therapist who quickly discovered that Christopher has perfect pitch.
Onchocerciasis, aka river blindness, is a disease caused by a parasitic worm transferred to people in tropical environments by black fly bites. The World Health Organization (WHO) has listed onchocerciasis as a neglected tropical disease. Some 37 million people are living with river blindness, mostly in sub-Saharan Africa. There are treatments available for the condition, but there is little economic incentive for drug companies to invest in a cure, according to two retired scientists who are searching for a cure. Please take a moment to listen to a short interview with the scientists.
In the 21st Century, it’s easy to take technology for granted, most of us rely on various gadgets to assist our lives, such as smartphones and GPS. However, for the visually impaired, technological advancements can monumentally improve life quality. A legally blind 16-year-old received the gift of virtual vision, just in time for Christmas. Alyssa Baxter is using Vuzix M300 augmented virtual reality glasses, the device helps her do many things, such as identifying colors, detect moods on faces, magnify surroundings up to 15 times, and read text in more than 100 languages.
Leber's congenital amaurosis (LCA) is a rare inherited eye disease that presents itself at birth or in the first few months after birth. The vision-destroying genetic mutation can now be treated with Luxturna, a gene therapy injection that replaces a defective gene, which prevents the retina from converting light into electronic signals sent to the brain, with a corrective gene. LCA induced blindness only impacts a small group of Americans, but the FDA approved intervention is a significant advancement in the field of vision loss.
An eye care company started a fundraiser called Holiday Lights for Sight. The company was able to raise money for a local child who is losing his vision, using a display of 20,000 lights, set to music. Jalen Rodriguez, is a junior in high school who has a rare disorder causing vision loss. Over $2,000 dollars has been raised to purchase a Braille notetaker for Jalen; the device is a specialized computer that will assist him with his school work.
New research could assist ophthalmologists in stemming the tide of macular degeneration. Dr. Jayakrishna Ambati and colleagues discovered that an enzyme called cGAS, which plays a vital role in the body's immune response to infections, unexpectedly has a hand in killing cells in the retina. Researchers are currently working to develop drugs that could inhibit the enzymes function.
Roughly 21 percent of blind or visually impaired adults over 25 years of age do not have a high school diploma, and only 22 percent have earned a bachelor's degree, according to the American Foundation for the Blind. With help, people with visual impairment can succeed in school, and pursue dreams of higher education. Lindsey Towns experienced vision loss at the age of 13, and yet she continues to excel in school with the help of her visual impairment teacher.
A UCLA study shows that 9 percent of adults in California have been diagnosed with diabetes, a severe health condition that can result in blindness, heart disease, stroke and infections resulting in amputations. High-sugar intake is one of the leading causes of diabetes. A significant number of Californians meet the criteria for prediabetes, which means the need for prevention programs is enormous.
Blindness or paralysis doesn’t keep people from fulfilling their dreams of achievement. Last week, more than 75 adaptive athletes competed at the 2017 Stance ISA World Adaptive Surfing Championship in La Jolla, CA. The four-day competition concluded with Team Brazil taking gold, Australia the silver, and Team USA the bronze.
Ron Long’s service in the U.S. military shaped his life in more ways than one, stealing his eyesight and developing his principles for living a meaningful life. After being blinded by a chemical agent, Long’s honorable discharge for being visually impaired led to becoming a restaurant and mobile food service businessman. His delicious “Santa Maria Style Barbecue” and the speed in which it can be made, and served, landed him a dining contract for the Navy in San Diego. He also has a portable barbecue pit stationed at the U.S. Army National Training Center in Fort Irwin, CA. Long also hosts fundraising events for the Army Emergency Relief Program and Toys for Tots.
A variety of assistive devices and gadgets are available due to advances in technology in recent years. Often with the goal of granting access to services or products to as many people as possible while minimizing barriers and usability difficulties, various assistive devices are coming to market rapidly. These handy inventions can make daily tasks less challenging for people with disabilities.
At 6 years old, an undeniable musical gift emerged in Henry Butler. Today, at the age of 68, Mr. Butler is a nationally recognized pianist, vocalist, and composer despite losing his sight as an infant due to glaucoma. He explores various genres including jazz, gospel, blues and classical. Mr. Butler’s talent does not end with him being a brilliant musician. He also possesses a passion for photography. His work can be seen in various exhibits and in the HBO documentary “Dark Light: The Art of Blind Photographers.” 
Statistics indicate that vision loss makes academic success challenging. Low vision and blind students who graduate from high school and college are a minority. Facts like these don't seem to phase 13-year-old Lindsey Towns who experienced vision loss just before entering 8th grade. Lindsey's favorite subject is math although a universal audio tool for learning math does not exist today. She has found creative ways to accommodate her disability. In the meantime, a system is being developed that can reduce learning barriers for disabled students. 
Many who suffer with glaucoma use eye drops as part of their treatment plan. The medication can prevent irreversible blindness if done in the early stages. Typically, the drops need to be administered 3 times per day though. It can be arduous to keep up with a timetable of this intensity. To make it even more challenging, much of the medication is drained into the patient's blood instead of inside the eye. Researchers at the UCSF Schools of Pharmacy and Medicine believe that dissolving implants could be the answer. 
Peanut was born without sight. Her owner knew right away as the lamb stuck close to her mother and seemed to find her way by using sound. Peanut soon learned how to find food, water and face challenges though. Watching the little lamb, inspired owner Jim Thompson to pen a children's book that is motivating readers of all ages to fight through adversity and live their best life. 
With a few modifications, most sports can be adapted for the visually impaired. This goes for ice hockey as well. While adaptive hockey has been enjoyed in Canada for several decades, it has only recently been introduced in the United States. The players appreciate having the opportunity to use their athletic ability and are experiencing the benefits of community connection with their teammates at the same time. 
When vision deteriorates, the morning routine can bring on feelings of frustration. Tasks like hair styling, shaving or applying make-up which were once routine turn into challenging exploits that seem impossible. Fortunately, those who are willing to make a few simple adjustments can enjoy less frustration, smoother mornings and the confidence that comes from starting the day looking neat and put together. 
Those living with vision loss, often visit new locations ahead of time to memorize the space. They sometimes worry about getting lost. For this reason, Rasha Said developed a program that uses a smart phone app to provide information to the blind that many sighted people take for granted. This information helps the visually impaired navigate independently and also offers the freedom to explore. 
Echolocation uses sound waves and echoes to determine the location of objects. This method, used by bats to find food and navigate in the dark can also be used by humans. In fact, with training, the visually impaired can learn to be skilled at echolocation giving them the ability to see the world around them through their ears. It's another tool that can be used to give independence to those who live with vision loss. 
Dr. Jitender Aggarwal lost his vision in 2004 and learned first-hand about the difficulty of engaging with a community that was often inaccessible to those living with a disability. This experience fuelled his passion to help others gain the skills needed to create more inclusivity. Since that time, he has helped close to 10,000 people with disabilities obtain skills and jobs in different sectors of business.
Companies have a few good reasons to improve digital accessibility. Increasing bottom line profits and avoiding litigation top the list. Corporate giant, eBay has appointed an Ambassador for Accessibility and suggests that improvements to this area can offer great returns and provide surprising opportunities for growth.
For people living with vision impairment, getting out socially can be challenging. It may seem unlikely that visiting an art museum could be a social event for the blind. The Seattle Art Museum does not think so. Every month, the museum hosts guided tours complete with trained escorts prepared to describe art pieces to the sight-impaired. 
Running a marathon is hard work. Running a marathon without vision assisted by a guide is hard work. Running a marathon without vision and without a guide seems impossible. Thanks to assistive technology, called Wayband, a blind runner will cross the finish line at the New York Marathon unassisted for the first time. 
Due to a degenerative eye disease, Walfre Lopez experienced vision loss over 20 years ago. He recently underwent a complex surgery which implanted a computer chip in the back of his eyes. With the use of special glasses he can now see shapes and contrasting images and is learning to use his new found 7th sense as vision. 
Painter Ken Alexander's life is full of challenges. Mr. Alexander has faced each one with the determination and courage. From being a single dad to beating prostate cancer, Ken has persevered through hardship. He was diagnosed with glaucoma which eventually caused vision loss. That has not stopped him from moving forward with his dreams to pursue an art career. He just opened studio. 
Dan Mancina lost his vision due to a degenerative eye disease. Although he had been skateboarding since he was 7 years old, he was unable to continue this activity as a person with vision loss. Until, he decided to do it anyway. Through practice, hard work and perseverance, he is proving that there are no limits to the human spirit. 
In recent years, accessibility lawsuits against companies have increased. With 20% of the population living with a disability, it would be wise for businesses to take this issue to heart. It is expected that the percentage of those living with a disability will increase as baby boomers get older. Creating an atmosphere of inclusion is simply morally right. 
Her mother was blind for as long as she remembers. She can recall times from her childhood when her mother was not given equal access. The Americans with Disabilities Act has changed that. Or has it? Her mother's most recent hospital stay left this daughter scratching her head and searching for answers. 
These women lost their vision at different stages of life. They now educate others and create awareness on what vision loss looks like and willingly share insight on how best to support them and those like them. They are successfully building a culture of sensitivity and teaching those around them how they would like to be treated. 
Carina's Bakery is special for so many reasons. It was created by a courageous and determined woman who wanted to offer a variety of vegan baked goods. The shop is equipped with assistive technology and signs that encourage customers to be patient. Dogs are welcome. The visionary behind this project is visually impaired and so are the employees. 
Steph Fernandes wanted to use her education to serve and inspire young people. When she got the job as Assistant Public Defender, she was given the opportunity to live out her dream. Her presence in the courthouse has sparked conversations about blindness and independence as well as encouraged dialogue around accessibility. 
Vera Jones, a collegiate basketball athlete had been inducted into the Hall of Fame and was used to winning. Winning almost never comes without hard work and the ability to face challenges though. Her strong will and determination were engaged off the court, when her son faced one of his toughest battles – losing his sight.