It’s Lin/Linda. I created this page to go with Sue’s page Not Your Parents’ AMD. Like some of you, I had a loved one with AMD. It was my father who was diagnosed with AMD in 2005 at the age of 82. At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed. He progressed to geographic atrophy (GA), that much I knew. He was the sole caregiver for my mother who had Alzheimer’s Disease. He continued to drive (not safely), take care of her and the house. He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.
I wondered how things have changed since then which led me to do this timeline review. Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible. That is if a person learns how to use the various devices and apps available.
I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005. He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”
I know I have missed many events that have been critical to the history of the treatment & care of AMD. There is SO much information out there and I’ve tried to use the most significant dates I could find. Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.
1st Era: 1969–1979
- Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
- Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
- Relationship of drusen to age-related macular degeneration
- Other developments:
- 1976-1977 first personal computers affordable for home use
- more low vision aids:
- 1960s large print books became available
- 1976 large print calculators became available
- 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
- Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
- Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
- mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
- Other developments:
- 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
- 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
- mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
- 1992 Americans with Disabilities Act (ADA)
- 1983 first cell phones
- 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
- low vision aids:
- MaxiAids catalog of aids for orders from people with low vision & other impairments
- technology/low vision aids:
- 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
- 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
- Evaluation of radiation therapy for neovascular AMD, not proven to be effective
- Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment; 2001)
- Prevention trials: results AREDS released 2001
- Other developments:
- 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
- 1996 Google released
- 1998 first e-book reader The Rocket
- 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
- 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
- Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
- Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
- Prevention trials: results AREDS2 released 2013
- Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
- Other developments:
- 2011 First baby boomers turn 65
- 2004 Facebook
- 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
- technology:
- 2007 Amazon Kindle e-reader; iPhone & Apple IOS
- 2008 Android 1.0 & Android phone
- 2010 Apple iPad
- technology/low vision aids:
- 2005 Apple VoiceOver for Mac users
- 2009 VoiceOver added to iPhone IOS
- 2010 FDA approved implantable telescope
- smart glasses/wearable technology
- 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
- ongoing research areas:
- 2017 first treatment for geographic atrophy will be available in December
- As of July 7, 2017, there are 226 research studies listed in clinicaltrials.gov that are recruiting and not yet recruiting. 686 are listed as completed. 94 are active but not recruiting.
- I’ll continue this series in “Timeline Part 2: Research in Treatment & Care for People with Macular Degeneration” coming soon!
- If you would like to read more about current & ongoing research, you can go to:
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FDA approved.
UK Implant of tiny telescopic lenses
US Implant of telescopic lens for those with advanced stage wet or dry AMD. Candidates have to qualify including no longer be candidates for medications.
CentraSight partners with BrightFocus for research and patient education. CentraSight provides & inserts the telescopic lenses.
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June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.
2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated. I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey. Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.
Frequently Asked Questions
Click here for the list of Frequently Asked Questions from our Facebook group.
AREDS2-based Supplements
There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.
AREDS2-based Supplements With 0 or 25mg of Zinc
Click here for the list.
Navigating
There are a lot of links here. I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS. When you are done with the new page you opened, just close it. You do NOT need to use the back option. If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.
Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.
Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.
Topics-click below to move to a topic
Links We Like
- Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
- Click here for a great glossary
- Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
- Videos
- Click here for several videos
- Click here for the UK Macular Society’s Say Hello to Mac
- Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
- Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
- Click here for an article about depression after diagnosis
- Click here for a very comprehensive page about wet AMD
- Click here for a very comprehensive page about dry AMD
- Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
- Click here for a short introduction to stems cells, what they are and how they can be used.
See what vision is like at the various stages of AMD
Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.
Glossary
Websites devoted to AMD and Other Forms of Macular Degeneration
listed in no particular order
Websites containing information about AMD and Other Forms of Macular Degeneration
listed in no particular order
Support
I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one you’d like to add.
Message Boards including ones from
By postal mail
I don’t know if these are still accurate.
- Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
– Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
- Macular Degeneration International
is now a part of Foundation Fighting Blindness
Toll Free Helpline 1-800-683-5555
EMail: MDInfo@blindness.org
– Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
- Vision Support Group-download video presentations This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases. You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport
Where to find services
- In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
- In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
- In the US: click here to search for a wide variety of services (more than the link above)
- In Australia: click here to find an ophthalmologist and optometrist
- Worldwide: click here for resources worldwide
Resources for Students
Books and reading materials
Specific Titles
Sources of Books
Formats: Braille, large print, e-book and audiobooks
Videos
Personal stories of living with AMD
Online newsletters
What is AMD?
Wet Form
Dry Form
How fast does AMD progress?
- A good article about how difficult this is to answer
- Great video that explains why early detection is important especially when detecting the change from dry AMD to wet
What is Stargardt’s Disease?
Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.
The Science Stuff
Role of RPEs
Geographic Atrophy
Symptoms
Charles Bonnet Syndrome/Visual hallucinations
Other problems with vision & AMD
- problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
- eye problems that have similar symptoms as AMD:
Risk factors
Age
- Age is a large factor but can start earlier
- Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others. See Stargard’s Disease section above.
Diet/nutrition (working on this section)
- diet low in various nutrients & high in others have been linked to AMD.
- See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.
Race
- Caucasians more prone to AMD than African-Americans or Hispanics/Latinos (several references to this but no recent studies).
- 2012 database search ‘AMD by race’
- Study about the higher-than-other-racial-group incidence of AMD in those of Chinese heritage.
Gender
- AMD more common in women perhaps because women live longer than men
Uncontrolled high blood pressure
Uncontrolled high cholesterol
Smoking
Blue Light
Eye Color
Aspirin & other medications
Other possible causes
- Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.
Connection between AMD and Alzheimer’s Disease
Treatments
- FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)
Research/Clinical trials
- Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)
- Summary of Research & Developments 2017
- Research in the UK into earlier detection and treatment
- Click here for a 28-page brochure from the National Eye Institute (NEI) called “Clinical Trials in Vision Research: Information for Volunteers
- Click here for more information about ongoing clinical trials for dry AMD.
- Click here for more information about ongoing clinical trials for wet AMD.
- Sustained-release treatments for wet AMD (after you read this article, if you are interested, do a search on the link above to ‘more information about ongoing clinical trials for wet AMD’.
- Study where drug in an injection would last longer than current drugs for wet AMD.
- Article CNN March, 2016, article about ongoing clinical trial in London which has had encouraging results. In addition to information about the study, it includes a simulation of vision loss due to AMD, a description of the disease process, and a good explanation about how stem cells work for AMD and other diseases.
- Click here for a description of the Audacious Goals Initiative (AGI) and what it is. Briefly, it started as a contest to come up with the most innovative goal for improving vision. The ‘winning’ goal is “to regenerate the neurons and neural connections in the eye and visual system.”
- Key Research including AREDS, AREDS2, Blue Mountain Eye Study, The Beaver Dam Study, and others
How can I become a part of a clinical trial?
- A list of sources of information about clinical trials and how to find out for you to participate in.
- You can search for clinical trials from the links above
- There are registries where you sign up and enter information about the status of your eyes. Researchers will use this information to find people that match their research and contact you. Click here for more information about these registries in the US and elsewhere
Gene Therapy
Bionic Eye/Retinal Implants
- What is a bionic eye? It’s also called retinal implant or retinal prosthesis. Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
- Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
- March 21, 2016 UK Bionic eye being tested
- Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.
Nutritional Supplements
- See Vitamins/Supplements section below.
Stem Cells
Coping with low vision
Low Vision Aids
Wearable Technology
Suppliers of low vision aids
Financial Help
Sunglasses
Lamps
Transportation
- A website for the US where you enter your zip code and transportation options for your area will be shown.
Bioptic Driving
Depression
Checking vision
Amsler Grid
Self maintenance/self care
Low vision rehabilitation
Vitamins/Supplements
Nutrition
Exercise/Activity
More to come, you can check out these posts now
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