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STATISTICS ON BLINDNESS AND VISUAL HANDICAPS
NEW SECTION: Sources of statistics on blindness and visual handicaps.
"Information on Eye Conditions and Diseases on the Internet," Focus on Electronic Information 98-06, prepared by the National Library Service, is a good overview of resources dealing with a wide variety of conditions and diseases.
"Eye Resources on the Internet" was compiled for the Association of Vision Science Librarians and is currently being updated. The majority of the sites are directed at professionals, but many of them also have much useful material directed at patients and their families.
"Adjustment To Blindness And Visual Impairment" "is a forum using email and peer counseling to bring about a more complete adjustment to blindness."
Albinism: Rob McKrill's albinism web site includes his personal experiences, a good bibliography and more than seventy links to other albinism resources.
The International Albinism Centre, University of Minnesota, conducts research into the physiology and genetics of albinism. "Facts About Albinism," by a team of four researchers, is an excellent brief introduction to the subject.
Albinism: The National Organization for Albinism and Hypopigmentation (NOAH) "is a volunteer organization for persons and families involved with the condition of albinism. It does not diagnose, treat, or provide genetic counseling. It is involved in self-help, while trying to promote research and education."
Albinism: The Albinism World Alliance (AWA) is a network of albinism support groups in various countries, including the United States and Canada.
American Diabetes Association: information, research, advocacy, news, professional and consumer magazines on-line, nutrition and recipes. Information and Action Line: 1-800-DIABETES.
Amblyopia: Prevent Blindness America has an Eye Patch Club for children and families dealing with amblyopia. Phone: 1-800-331-2020.
Aniridia: the Canadian Foundation for Aniridia Research provides information about this rare condition.
Association for Macular Diseases, Inc. is a "national support group, solely concerned with the problems of individuals and families who are endeavoring to cope with both the practical and emotional problems brought about by macular degeneration." They publish a quarterly newsletter, "Eyes Only," available on request. Their web page seems to be under construction.
Center for Retinal Research, Columbia University, Department of Ophthamology: links to ophthamology organization and seventeen online eye journals.
Diabetes: National Diabetes Information Clearinghouse disseminates knowledge about diabetes among patients, health care professionals and the public, and responds to requests for all sorts of information. Many of its consumer publications are available online, as is a searchable information database.
Diabetes: Rick Mendosa's Diabetes Directory includes annotated lists of links to organizations, research institutions (governmental, educational, private), patients' personal sites and much more. The author is a free-lance writer specializing in diabetes (which he and his wife have) and he reprints scores of his previously published articles.
a href="http://www.redcross.org/services/disaster/beprepared/disability.html">Disaster Preparedness for People with Disabilities," published by the American Red Cross, is "designed to help people who have physical, auditory, or cognitive disabilities to prepare for natural disasters and their consequences." It is available as a PDF or Microsoft Word download.
Foundation Fighting Blindness: funds laboratory and clinical research into treatments for all forms of retinal degeneration; site offers information about retinitis pigmentosa, Usher syndrome, macular degeneration and other eye diseases.
The Glaucoma Foundation: quarterly newsletter, "Eye to Eye"; patient guide, articles on how patients can aid in their own treatment; referrals for medical help.
Glaucoma Research Foundation: answers to frequently asked questions about glaucoma as well as comprehensive information; also funds research and public education.
International Glaucoma Association: based in United Kingdom, but has links and information of general interest.
In the Blink of an Eye: a page devoted to ocular histoplasmosis.
The International Foundation for Optic Nerve Disease: "Providing and disseminating information on causes, prevention and treatment"--has a useful dictionary of optic nerve diseases and related medical terms.
The Wilmer Eye Institute at Johns Hopkins University has excellent brief descriptions of the most common eye conditions and diseases, with explanations of treatment options.
The Knights Templar Eye Foundation has as its mission "To provide assistance to those who face loss of sight due to the need for surgical treatment without regard to race, color, creed, age, sex, or national origin provided that they are unable to pay or receive adequate assistance from current government agencies or similar sources and to provide funds for research in curing diseases of the eye."
Lighthouse International maintains a list of "organizations [that] assist people who cannot afford eye examinations, eyeglasses or surgery."
"Living with Low Vision: A Resource Guide for People with Sight Loss," 6th ed. (Lexington, MA : Resources for Rehabilitation, 2001) is a comprehensive guide in large-print format to services and products that help people with sight loss achieve independence in daily living.
Low Vision: The National Eye Institute of the National Institutes of Health has an excellent brief guide to low vision, in large print; it is available free by calling 1-800-LOW-VISION.
The Macula Foundation sells "Age-Related Macular Degeneration," a CD-ROM with large-print booklet that covers general information, diagrams and an interactive Amsler Grid test. The CD-ROM is produced by Interactive Eye, which has several other titles including "Human Vision" and "Refractive Surgeries."
The Macula Foundation, Inc. also sponsors www.macula.org, "an online resource for anyone seeking information on macular/retinal disease."
"Facts About: Macular Degeneration & Nutrition" is produced by the American Academy of Ophthamology on their EyeNet site.
"Antioxidants, Aging, Xanthophylls & MD," by Philip Filner, discusses some issues in nutrition and macular degeneration.
Macular Degeneration Foundation: research reports, newsletter, links to other vision sites, FAQ's about eye disorders, ideas and techniques for coping.
The Macular Degeneration Help Center, created by the Macular Degeneration Partnership, offers information about causes and prevention, treatment options, ongoing research, links to many other helpful web sites and a monthly on-line newsletter.
Macular Degeneration International serves "the needs of persons with early onset (juvenile) or late onset (age-related) macular degeneration." The site has extensive descriptions of both forms of the condition.
Macular Degeneration Support/MD Support, Inc.: maintains an e-mail discussion group, message board, chat room, very large set of links to organizations, sources of low-vision aids, large-print and taped reading material. Also a selection of downloadable files dealing with recent topics in nutrition, research and treatment.
Marfan Syndrome: the National Marfan Foundation has a pamphlet on the ocular consequences of Marfan Syndrome.
MEDLINEplus is a searchable database of high quality information created by the National Library of Medicine at the National Institutes of Health. Search such topics as cataract, eye cancer, eye injuries, glaucoma, macular degeneration and, more generally, vision disorders and blindness.
The Merck Manual of Medical Information--Home Edition has discussions of the most common eye disorders and conditions. They are in Section 20, Numbers 216-227.
Multiple Chemical Sensitivity: Though not a visual disability, MCS can prevent some people from handling print on paper and this makes them eligible for talking books from the National Library Service.
Multiple Chemical Sensitivity: MCS Referral & Resources provides "professional outreach, patient support, and public advocacy devoted to the diagnosis, treatment, accommodation, and prevention of Multiple Chemical Sensitivity Disorders." The site has a bibliography and good set of links.
National Diabetes Association: abundant information for patients and their families and for professionals in the field; recipes and online periodicals.
National Eye Institute:information for researchers, health care professionals, educators, the media, patients and the general public; text-only or graphical presentation.
The National Organization for Rare Diseases: provides information about 26 eye diseases and conditions (some not very rare) and descriptions of over 900 organizations dealing with those and other diseases.
Jay Lavine's page, "Nutrition and the Eye," part of the Vegetarian Resource Group, covers "The Ideal Diet for Good Eye Health" and the effects of diet on glaucoma, age-related macular degeneration, cataracts, diabetes and retinopathy.
Nystagmus Network is a UK-based self-help group providing support for adults and children with nystagmus, their parents and teachers and fostering research into the condition. Includes several dozen links to international organizations concerned with nystagmus and other visual problems.
The American Nystagmus Network (ANN) "seeks to provide technical and experiential information about nystagmus and its manifestations, but not medical advice. Information relates to a wide range of concerns including without limit, diagnosis, type, visual effects, non-visual effects, tests and available treatment. It also covers heredity, research, and known statistical data on nystagmus. ANN also seeks to provide help in coping with nystagmus through the exchange of information and ideas, guidance and counseling."
The Ohio LIONS Eye Research Foundation (OLERF) has a dictionary of medical terms comprehensible to laymen and a huge archive of questions and answers about many different eye diseases and conditions.
Pacific Eye Center (Australia): information about cataracts and glaucoma; links to other eye sites, particularly in Australia.
Post-Polio Syndrome Central has a huge number of light-annotated links leading to information about post-polio syndrome, as well as disability in general, pain, fibromyalgia, chronic fatigue syndrome, wheelchairs, coping techniques, disability advocacy, general health and welfare and other PPS-related information.
Prevent Blindness America: has good brief explanations of a range of eye conditions and diseases.
The Association for Retinopathy of Prematurity and Related Diseases (ROPARD): their "primary goal has been the funding of clinically relevant research to understand, treat, and prevent retinopathy of prematurity and related retinal diseases." ROPARD has a 90-minute video, "Retinopathy of Prematurity for Parents, Educators and Nurses." The price is $25.00 plus shipping.
Retinal Diseases: "Focus" is an online newsletter "for the purpose of providing information on alternative treatments and current research and studies that are available for retinal degenerative disorders."
Retinitis Pigmentosa Home Page: home of RPLIST, an e-mail discussion list dealing with RP, macular degeneration and Usher's Syndrome; excellent list of organizations and links, especially to resources outside North America; articles and FAQ's; a guide to adaptive equipment.
"John Wenberg's Retinitis Pigmentosa Page" has an excellent collection of unannotated links to retinitis pigmentosa organizations, research, general sites dealing with blindness and visual impairment, guide dogs, software and much else. The coverage is international.
The Royal National Institute for the Blind has fact sheets and case studies about a very wide range of eye diseases, besides the more common retinal detachment, cataracts, diabetic retinopathy, glaucoma and retinitis pigmentosa.
RP Foundation Fighting Blindness
(National Retinitis Pigmentosa Foundation, Inc.)
Executive Plaza 1, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
RP International (Woodland Hills, CA): research, information, human services; news note on audio-described theatrical movies.
Septo-Optic Dysplasia/Optic Nerve Hypoplasia Support Group Homepage: medical information, downloadable guide for parents, electronic mailing lists, bulletin board and chat line.
"Sound Solutions: Answers for People Adjusting to Sight Loss" is a series of fourteen free audiotapes, from the Braille Institute of America, that present "practical information, resources and encouragement for seniors . . . who are experiencing sight loss. They are professionally produced, using creative scripts, testimonials, sound effects, music and humor to communicate practical information for daily living."
The UW-Madison Health Sciences Libraries' Consumer Health and Medical Information project collects sites relating to the health of children, women and aging people, as well as chronic diseases. There are also links to sites of special interest to Wisconsinites, Medicaid in Wisconsin, A Guide to Health Insurance and Worker's Compensation Insurance for Farm Families, and The Center for Agricultural Safety and Health. In addition, there are links to MedlinePlus, PubMed and HealthInfoQuest, all of which provide access to authoritative medical information.
Steve Alan Edwards, "Building an Eye," describes the work of Richard Normann and others doing research on an artificial eye. The "Dobelle Eye" consists of "a sub-miniature television camera and an ultrasonic distance sensor, both of which are mounted on a pair of eyeglasses. The sensors connect through a cable to a miniature computer, which is worn in a pack on a person's belt. After processing the video and distance signals, the computer uses sophisticated computer-imaging technology, including edge-detection algorithms to simplify the image eliminating "noise." The computer then triggers a second microcomputer that transmits pulses to an array of 68 platinum electrodes implanted on the surface of the brain's visual cortex."
Artificial Retina Chip.
The Center for Retinal Research, Columbia-Presbyterian Medical Center, produces "The Retinal Transplant Newsletter," an online newsletter that covers recent developments in retinal transplant research, as well as related areas.
Massachusetts Eye and Ear Infirmary research on artificial vision.
Optobionics Corporation has inserted "Artificial Silicon Retinas," each containing about 3,500 solar cells, into the eyes of three patients.
Neal S. Peachey and Alan Y. Chow, "Subretinal implantation of semiconductor-based photodiodes: Progress and challenges," Journal of Rehabilitation Research and Development, Vol. 36 No. 4, October 1999.
The Retinal Implant Project: Harvard-MIT Collaboration.
A group of scientists at the University of Wisconsin are researching the use of "an array or matrix of small electric stimulators on the surface of the tongue." "The goal is to develop a practical, cosmetically acceptable, wireless system for blind persons, with a miniature TV camera, microelectronics and FM transmitter built into a pair of glasses, and the electrotactile array in a dental orthodontic retainer."
The National Eye Institute, in partnership with Prevent Blindness America, has produced a new study, Vision Problems in the U.S., with state-by-state statistics on the incidence of four major causes of blindness and visual impairment, diabetic retinopathy, age-related macular degeneration, glaucoma and cataracts. "The . . . study was the result of a 2001 consensus meeting, convened by the National Eye Institute and involving many of the world's leading ophthalmic epidemiologists. Data were obtained from a systematic review of the major epidemiological studies with the cooperation of their authors."
The American Printing House for the Blind compiles an annual "Distribution of Eligible Students Based on the Federal Quota Census." There is a general breakdown of students by the four major types of programs: Schools for the Blind, State Departments of Education, Programs for the Multihandicapped, and Rehabilitation Programs. The students are listed by grade and reading media. The printed APH "Annual Report" compiles more detailed statistics state by state.
The Association of Vision Science Librarians collects various eye care statistics on blindness and visual impairment in general and also on many specific eye disorders. Many of their statistics are drawn from medical sources, as opposed to general demographic surveys.
The Census Bureau collects statistics on disabilities.
The Disability Statistics Center: A Rehabilitation Research and Training Center at the University of California, San Francisco aims "to produce and disseminate statistical information on disability and the status of people with disabilities in American Society and to establish and monitor indicators of how conditions are changing over time to meet their health, housing, economic and social needs." They produce numerous reports and abstracts, all available online.
The International Center for Disability Information aT West Virginia University has several dozen statistical tables covering states, the US as a whole, and worldwide disability statistics.
Lighthouse International publishes "Statistics on Vision Impairment: A Resource Manual." It is available online in PDF format (333KB). The Lighthouse also produces "Statistics on Children and Vision Impairments," which is likewise available online. It includes a valuable set of references.
The National Center for Education Statistics complies statistics reported to the United States Department of Education. There is a search engine, as well as browsable lists.
The National Center for Health Statistics of the Centers for Disease Control has a great deal of information available, derived from National Health Interview Survey on Disability (NHIS-D); many of the reports are available only in PDF format. It also has many links to other sources of disability statistics in more easily accessible formats.
The National Institute on Disability and Rehabilitation Research publishes "Chartbook on Work and Disability in the United States, 1998" and "Chartbook on Disability in the United States, 1996," both of which are available online and for downloading in PDF format. The Institute also maintains a list of other sources of statistics on disabilities.
The Prevention of Blindness program of the World Health Organization collects various statistics on the incidence of blindness worldwide and by region.
Wisconsin: The Wisconsin Department of Public Instruction Special Education team "collects and processes data on students in special education programs in response to federal requirements." Many of the reports, including breakdowns by type of disability, are available online.
Any serious study of the prevalence of blindness and visual impairment in the United States must start with the the USABLE Data Reports published in the "Journal of Visual Impairment and Blindness" (USABLE stands for Using Statistics About Blindness and Low Vision Effectively).
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