One of the most significant challenges facing eye and vision researchers is developing an effective treatment for dry age-related macular degeneration (AMD). Although there are now a number of well-regarded FDA-approved drug treatments for wet AMD, the key to effective dry AMD treatment remains elusive, although several potential treatments have emerged in recent years.
Current treatments for dry AMD include a number of non-drug-related measures, including (a) nutritional supplements recommended by the Age-Related Eye Disease Study 2 (AREDS2), and (b) controlling a range of lifestyle factors, including diet, weight, blood pressure, smoking, and blue and ultraviolet light exposure.
This month, researchers from Harvard Medical School and the University of Crete in Greece have published findings from a small phase 1/2 clinical trial in which 10 out of 23 subjects with dry AMD who were given high doses of the cholesterol-lowering drug Lipitor showed regression of drusen deposits (a buildup of waste materials beneath the retina, explained below) and demonstrated some improvements in visual acuity.
Although this research was conducted with a small number of subjects and is in its earliest stages, the results show promise as a potential treatment for dry AMD.
What are Statins?Statins are a class of drugs, such as Lipitor, Crestor, and Zocor, that are used in the prevention and treatment of heart disease. They act to reduce the levels of fats, including triglycerides and cholesterol, in the blood by altering the enzyme activity in the liver that produces these fats. Although millions of people take statins to control blood cholesterol levels, they do carry the risk of a number of side effects.
Statins and Dry Age-Related Macular Degeneration (AMD)The research, entitled Regression of Some High-risk Features of Age-related Macular Degeneration (AMD) in Patients Receiving Intensive Statin Treatment, has been published online in the February 9, 2016 edition of EBioMedicine, an online-only, open-access journal, newly launched by the leadership of the journals Cell and The Lancet.
The authors are Demetrios G. Vavvas; Anthony B. Daniels; Zoi G. Kapsala; Jeremy W. Goldfarb; Emmanuel Ganotakis; John I. Loewenstein; Lucy H. Young; Evangelos S. Gragoudas; Dean Eliott; Ivana K. Kim; Miltiadis K. Tsilimbaris; and Joan W. Miller, who represent the following institutions: Massachusetts Eye and Ear Infirmary/Harvard Medical School, Boston, MA and the University of Crete, Heraklion, Crete, Greece.
About Dry Macular DegenerationThe dry (also called atrophic) type of AMD affects approximately 80-90% of individuals with AMD. Its cause is unknown, it tends to progress more slowly than the wet type, and there is not – as of yet – an approved treatment or cure. "Atrophy" refers to the degeneration of cells in a portion of the body; in this case, the cell degeneration occurs in the retina.
In dry age-related macular degeneration, small white or yellowish deposits, called drusen, form on the retina, in the macula – the small sensitive area in the center of the retina that provides clear central vision – causing it to deteriorate or degenerate over time.
A retina with drusen
Drusen are the hallmark of dry AMD. These small yellow deposits beneath the retina are a buildup of waste materials, composed of cholesterol, protein, and fats. Typically, when drusen first form, they do not cause vision loss. However, they are a risk factor for progressing to vision loss.
More about the ResearchExcerpted from High-Dose Statins May Ease Macular Degeneration for Some, via DoctorsLounge.com:
High doses of cholesterol-lowering statin drugs – medicines such as Lipitor, Crestor and Zocor – may help people with … macular degeneration, a small study suggests. In the early-stage clinical trial, a team from Harvard Medical School assessed the effects of statin treatment in people with the dry form of age-related macular degeneration (AMD).
In the study, 23 patients with dry-form AMD were given a high dose (80 milligrams) of atorvastatin (Lipitor). In 10 of the patients, the fat deposits under the retina disappeared and they had a slight improvement in vision clarity, according to the study. It typically took a year to 18 months of treatment for these positive results to arise, the researchers reported. They noted that prior attempts to find ways to eliminate the fat deposits under the retina have failed.
However, "we found that intensive doses of statins carry the potential for clearing up the lipid [fat] debris that can lead to vision impairment in a subset of patients with macular degeneration," said study co-author Dr. Joan Miller. She is chair of ophthalmology at Harvard Medical School and chief of ophthalmology at Massachusetts Eye and Ear Infirmary and Massachusetts General Hospital, both in Boston. "We hope that this promising preliminary clinical trial will be the foundation for an effective treatment for millions of patients afflicted with AMD."
About the Study from EBioMedicineFrom Regression of Some High-risk Features of Age-related Macular Degeneration (AMD) in Patients Receiving Intensive Statin Treatment:
There is a lack of effective therapies for dry age-related macular degeneration (AMD), one of the leading causes of blindness affecting millions. Although AMD shares similarities with atherosclerosis, prior studies on statins and AMD have failed to show improvement. A limitation of these studies has been the heterogeneity [i.e., diversity] of AMD disease and the lack of standardization in statin dosage.
Here, we present for the first time evidence that treatment with high-dose atorvastatin [Lipitor] (80 mg) is associated with regression of lipid [fat] deposits and improvement in visual acuity, without atrophy [i.e., degeneration of cells] or neovascularization [i.e., new blood vessels developing in the retina] in high-risk AMD patients.
Objective: We were interested in studying the effects of high-dose statins, similar to those showing regression of atherosclerotic plaques [i.e., a buildup of fats, cholesterol and other substances in and on the artery walls] in AMD.
Design: Pilot multicenter open-label prospective clinical study of 26 patients with diagnosis of AMD and the presence of many large, soft drusenoid [i.e., drusen, defined above] deposits. Patients received 80 mg of atorvastatin (Lipitor) daily and were monitored at baseline and every three months with a complete ophthalmologic exam, best corrected visual acuity, fundus [i.e., retinal] photographs, blood work, and optical coherence tomography [i.e., medical imaging technology that produces high-resolution cross-sectional and three-dimensional images of the eye].
Results:Twenty-three subjects completed a minimum follow-up of 12 months. High-dose atorvastatin resulted in regression of drusen deposits associated with vision gain (+3.3 letters) in 10 patients. No subjects progressed to advanced neovascular AMD.
Conclusions: High-dose statins may result in resolution of drusenoid pigment epithelial detachments (PEDs) and improvement in visual acuity, without atrophy or neovascularization in a high-risk subgroup of AMD patients. Confirmation from larger studies is warranted.
VisionAware will continue to report the results of this macular degeneration research as they become available.
WORLD BRAILLE DAY – JANUARY 4, 2016
For about 200 years blind people have learned to read and write using braille. Braille is a tactile alphabet system of 6 dots in a 3X2 grid used to represent letters, numbers and symbols for most of the world’s languages. It plays an essential role in the lives of millions of blind people worldwide allowing them to access literature and study alongside their peers. Braille was invented by a young blind man, Louis Braille, when he was 15 years old (in 1824). At the time Louis was enrolled in the Royal Institution for Blind Youth in Paris. He wanted the right to read books just like other children and so he worked to create a tactile alphabet that would be easy to learn, replicate and use.
World Braille Day is annually celebrated on January 4, the birthday of Braille inventor, Louis Braille. The day recognizes the contributions of Louis Braille in helping blind and visually impaired people to read and write.
Braille - a code used by the visually impaired worldwide.©iStockphoto.com/bhofack2
Celebrate World Braille Day
Non-governmental organizations (NGOs) around the world use this day to create awareness about the challenges faced by visually impaired individuals and to encourage businesses and governments to create economic and social opportunities for the blind.
NGOs and disability organizations hold competitions and public outreach events. Teachers in schools teach the history of braille to their students.
About World Braille Day
Braille is a code that uses bumps and indentation on a surface to represent letters, which can be recognized by touch. Louis Braille, a French man who was blinded in an accident at a very young age, invented it.
Before Braille invented this form of communication, visually impaired people read and wrote using the Haüy system which embossed Latin letters on thick paper or leather. This was a complicated system that required much training and only allowed people to read, not write. Discouraged by this, Braille at the age of 15 invented the Braille code.
While there are now several different versions of Braille, Louis Braille’s code was arranged in small rectangular blocks called cells with raised dots in a 3 x 2 pattern. Each cell represented a letter, number or punctuation.
Since Braille is a code, all languages and even certain subjects like mathematics, music and computer programming can be read and written in braille.
Article from the Lions Magazine.
The visually impaired lag far behind in use of computers and smart phones. Lions are determined to close the gap.
BY ANNE FORD
About eight years ago, Aaron Carroll, now 47, began losing his sight to a disease called sarcoidosis. His rapidly diminishing vision led to the loss of his position as a customer-service worker—and with it, some of his self-esteem. After working with the Chicago Lighthouse to regain his computer skills and learn adaptive technology such as screen readers, Carroll was recently hired at a health clinic call center. "Working will definitely put me closer to regaining my independence," he says happily. "When you lose your vision, you become dependent on other people to help you do things. Going to work, that'll really help my self-confidence, knowing that I can take care of myself." There are countless other stories you'll hear from just about any computer instructor of the blind or visually impaired: the student who solved his transportation problem by learning to order groceries online. The deaf-blind man who can now navigate his town, thanks to a GI/5 with Braille display. The person who started crying when he successfully learned how to stream a radio sports broadcast from his hometown. The attorney who thought her career ended with her sight, until she learned how to use a computer again and began practicing law once more. The grandfather who learned how to take a photo of himself with his smart phone and send it to his daughter in another state, who hadn't seen him in years. "We see success stories
0 every day," says Ian Stenseng, a computer and assistive technology training manager for the Seattle Lighthouse for the Blind. The success stories typically are the result of intense computer training, excellent assistive technology and a knowledgeable and persistent instructor. But many of the
21 million Americans with some form of vision loss aren't so fortunate. Far too often those who are blind or visually impaired do not understand or use computers and other digital technology. The sighted world enjoys the technology of 2015. Those with visual impairments often lag years or decades behind. That's why Lions Clubs International Foundation (LCIF) recently granted the American Foundation for the Blind (AFB) $125,000 to deveibp a training and awareness program that will enhance technology literacy and competency among the blind and visually impaired. With the help of an advisory committee, whose members include Lion Dr. Tracy Williams, a low vision specialist, the AFB will use the grant for a one-y,ear planning, research, and training pilot that will seek to answer the question: exactly what must be done to bridge the technology divide for the visually impaired? The results will be shared with Lions Clubs International, university programs for teachers of the visually impaired and others stakeholders. It's a help-the-helpers
4 strategy. Train or educate those who assist the visually impaired to maximize the mastery of technology use and shrink the technology gap.
Statistics on computer use among the blind and visually impaired do not exist. But those who work with the blind know the technology gap is sizable. "Our belief is that most people who are blind or visually impaired either are not using a computer-accessibility strategy such as screen-access software or speech recognition, and that those who are using them probably are not using them all that well," says Paul Schroeder, the AFB's vice president of programs and policy. And we're not talking about gaining just the ability to play games and share pleasantries. Fewer than 40 percent of visually disabled Americans ages 21-64 are employed (as compared to the general employment rate of about 65 percent), and more than 30 percent live below the poverty line. In this digital age, computer skills are crucial to gainful employment, social connection and even routine daily activities. "If you don't have computer access, you really fall behind the general populace," says Peter Tucic, an assistive technology specialist at the Chicago Lighthouse for People who Are Blind or Visually Impaired, a social services agency that assists people with low or no vision. Tucic, who is blind, staffs the Lighthouse's computer assistance hotline, taking calls from anyone with vision loss who needs help interacting with assistive technology. "Generally the people I encounter aren't very informed about how to use computers, smart phones, and similar devices," Tucic says. "They might know, for example, that the iPhone can talk, but they don't know how to get the most out of it. People who didn't get on that first wave of computers—they're not one step behind, they're three or four steps behind. If you don't learn how to use an iPhone today, well, in five years your whole home could be on Wi-Fi. It's kind of like going from shooting a musket to operating a cruise missile. There are a lot of homebound blind people, and they're becoming sequestered and marginalized." For years, AFB has encouraged mainstream computer companies such as Microsoft to make their products compatible with assistive technologies and reviewed these technologies in its magazine, AccessWorld. Now, Schroeder says, the LCIF grant has equipped AFB to begin tackling what he calls "the training problem." A huge part of the reason that computer literacy levels among the blind are so low, he says, is that their teachers simply don't know the technologies well enough themselves. "Whether it's teachers who teach kids with blindness or counselors who teach adults with vision loss, there's a well-documented gap in instructors' own comfort level with the technology," he says. Mary Abramson, an instructor in the Chicago Lighthouse's office skills training program, has long known that training for computer instructors of the blind is not what it should be. In fact, most instructors in this field learn on the job. Why should that be? Well, formally training trainers is a costly endeavor, she points out, since most computer instruction in this population takes place one-on-one rather than as a group. "If we tried to have an entire computer class for visually impaired students, we'd never get a class together, because everybody's at a different place skill-wise and learns (477
Unlike most of his peers, Aaron Carroll, though blind, is adept at using a computer. He's shown working at a health clinic call center in Chicago.
in a different way," Abrahamson says. "One-on-one is, of course, not the most cost-efficient way to do this, but it seems to be the most effective." "A one-size-fits-all solution doesn't always work," agrees Stenseng of the Seattle Lighthouse. "Something that might work for somebody who has low usable vision is not going to work for someone who's a hearing-blind person or someone who's deaf-blind. We're constantly struggling between solutions that are as universally accessible as possible but also meet these very specific and diverse needs." And then there's the fact that in order for people with vision loss to use computers, they must understand its workings in much more depth than someone who's fully sighted. Whereas a sighted person can simply click an icon, for example, someone with low or no vision must "learn what those icons are and where they are and how they really work, because we use the keyboard commands instead of the mouse," Abramson points out. Thus a computer instructor for the blind must be even more knowledgeable than a computer instructor for the sighted. For now, "there's no formal training for people to do what I do—sit down and dig into the visually impaired person's abilities, needs, desires and skill level, and make sure that they're getting what they need," she says. "I think the AFB is right. There's a great need for this. We could have a lot more visually impaired people employed." ***
Luke Scriven doesn't quit easily. As an assistive technology specialist at the Chicago Lighthouse, he teaches those with sight loss to use computers. And while his students face many potential obstacles—complex software, low confidence, general discomfort with technology—computer literacy is just too crucial a skill for him to give up on any student. Even one as challenging as William. "William [name changed] was a veteran," Scriven recalls, "and as well as having vision issues, he had a bad memory." Scriven introduced William to CDesk, a computer program for the visually impaired. But at first, it seemed too difficult to master. "He'd try to use speech recognition commands, but he'd forget the commands, or he wouldn't speak very clearly," Scriven says. Then Scriven showed his student computer games such as hangman and solitaire. "I showed William how to play them, and he completely took off on them," he remembers. "He actually learned how to navigate CDesk so he could get to these games, and he learned where the keys were on the keyboard. He'd call me up all the time and tell me his high scores. It kept his mind active, and it helped him learn how to use the computer. By the time I finished my training with him, he could do word processing and use email." And there was a bonus: "The veterans here all shaAe their email addresses and send each other inspirational stories or jokes, so he was able to participate in that community." It's people like William LCIF aims to ultimately help through its grant to the AFB. Of course, this is far from the first time that LCIF has supported a large-scale program aimed at those with vision loss. In 1990, it launched SightFirst, which initially provided funding for programs that addressed the leading causes of preventable and reversible blindness. "We devoted a tremendous amount of resources to cataract surgeries, pills to ward off certain tropical eye diseases, training of eye care personnel and building and equipping eye hospitals—all designed to reduce the number of people who were blind or visually impaired," says Philip Albano, LCIF Sight Programs department manager. Now Sight First has expanded its mission to include programs for the blind or irreversibly visually impaired. "That set the stage, so when AFB came to us seeking interest in and support for their technology and training awareness program, we were in a position to fund it," Albano says. "AFB is a well-known advocate for the blind, and the goal of AFB and the goals of Lions are naturally in alignment." "We want to develop a testable training strategy that we replicate," Schroeder says. "At the end of the year, we hope we'll have something that's been proven to be useful, and that we can show that we're capable of growing with additional funding. It's a huge undertaking. We're a relatively small organization trying to tackle a big mission across a lot of areas. But it's hard to overstate the importance of access to technology for people who are blind. Sometimes I bristle when people say, 'Technology's only part of the answer.' Yes, but it's a huge part of the answer."
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(Above) Technology such as the iPhone money identifier can be immensely useful for those with vison impairments.
Lefty's Vision Blog
*Coping with vision loss everyday due to Stargardt's Disease and want to share with others who have similar experiences.
"Ability over Disability"
Tell us your story!
Were all in this together. If you are personally dealing with vision loss or have family members dealing with vision loss, I invite you to share your story. I also invite everyone to share any valuable information on vision loss prevention, useful low-vision aids, and any other tools that may assist individuals dealing with vision loss.
If you have Stargardt's, I invite you to also share your story on the Stargardt's web site. Use the link below.