June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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
- See what vision is like at the various stages of AMD
- What is AMD?
- Glossary
- Websites devoted to AMD and Other Forms of Macular Degeneratin
- Websites containing information about AMD and Other Forms of Macular Degeneration
- Support groups
- Where to find services
- Books & reading materials
- Videos
- Personal stories of living with AMD
- Online newsletters
- What is Stargardt’s Disease?
- Science Stuff
- Symptoms
- Risk factors
- Treatments
- Research/clinical trials
- Coping with vision loss
- Self-maintenance/ self-care
- More to come…
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
Go to the Top
Websites devoted to AMD and Other Forms of Macular Degeneration
listed in no particular order
- Macular Degeneration Partnership
- Macular Disease Foundation of Australia
- American Macular Degeneration Foundation
- Macula Vision Research
- Macular Society (UK)
- RNIB (Royal National Institute of Blind People; UK)
- RNIB (Scotland) there may be a branch near you.
- BrightFocus also Alzheimer’s & Glaucoma
- Macular Degeneration Association
Go to the Top
Websites containing information about AMD and Other Forms of Macular Degeneration
listed in no particular order
- maculardegeneration.net where you’ll find articles, forums, Q&A, and more for those with macular degeneration. You’ll be interacting with patient and caregiver advocates who are people who have the disease or take care of those with it.
- Living Well With Low Vision
- Prevent Blindness
- for professionals; also a section on Eye Health for the lay person: American Academy of Ophthalmology (AAO)
- CNIB (Canada)
- Foundation Fighting Blindness
- MD Support: The Eyes of the Macular Degeneration Community
- All About Vision
- American Foundation for the Blind and VisionAware (related)
- Fight for Sight
- Enhanced Vision
- National Eye Institute: Macular Degeneration
- Second Opinion: Macular Degeneration
- Wikipedia: Macular Degeneration
- Mayo Clinic (search for macular degeneration for articles on wet and dry)
- Patient Info: Macular Degeneration
- eyeSIGHT International: Sight for Humanity (links to International, North America and UK branches)
Go to the Top
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.
- Support by telephone
- Support groups US
- US & International Support Groups in the US and internationally
- UK: Macular Society and RNIB
- Canada: CNIB
Message Boards including ones from
- APH Connect
- Macular Society HealthUnlocked in the UK
- UK’s NHS site for AMD community page
- Facebook: Macular Degeneration Community, Stargardt’s Disease – Macular Degeneration, I’m sure there are others so search by ‘macular degeneration’
- maculardegeneration.net where patient and caregiver advocates are there to help
- Our Facebook page: My Macular Degeneration Journey/al
- Treatment & Charles Bonnet Buddies UK
- BrightFocus Foundation: Share your story, read story of others
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
Go to the Top
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
- Scholarships & Financial Aid for Students with Disabilities – https://www.
accreditedschoolsonline.org/ resources/scholarships- financial-aid-for-students- with-disabilities/ - Higher Education for Students with Disabilities – https://www.
accreditedschoolsonline.org/ resources/best-accredited- colleges-schools-for-students- with-disabilities/
Go to the Top
Books and reading materials
Specific Titles
- not recommendations, just referrals.
- A list of some books available about the prevention, treatment and daily living of macular eye diseases and low vision
- Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss. Also available from AFB as a download, large-print paperback and several e-book formats.
- The First Year: AMD written by patient-expert
- Fiction book called ‘Seeing Things’ about a woman with AMD. Includes information about AMD
- The Complete Guide to Saving and Maximizing Your Sight 2003
- Protect Your Sight: How to Save Your Vision in the Epidemic of Age-Related Macular Degeneration 2006
- Eat Right for Your Sight from the American Macular Degeneration Foundation
Sources of Books
Formats: Braille, large print, e-book and audiobooks
- US Library Service provides ‘Talking Books’ in Braille & audio
- US BARD (Braille and Audio Reading Download) also from the US National Library Service
- US BARD & BARD Mobile: YouTube video talking about the service
- UK RNIB Overdrive: ‘Talking Books’ by digital download
- Worldwide Kindle e-books, click here for sources for international purchases
- Worldwide Kindle e-book readers: which is the right one for people with low vision?
- Worldwide BookShare: free eBooks 300,000+ titles including all current and recent NY Times bestsellers; free for students, $50/year with $25 setup fee
- Worldwide DAISY (Digital Accessible Information System): source of e-books
- Worldwide Overdrive: borrow e-books & audiobooks from local libraries
- Available in many countries, audible.com (an Amazon company) sells audiobooks (click here for specific countries)
- US & Canada Sources of large print & Braille reading materials
- Many countries of the world BookBub: Free and inexpensive e-books covering many genres for various devices
- Similar to BookBub is Early Bird Books a source of inexpensive books for various devices
- Sue’s page about Talking Books and BARD
- Sue’s page about BARD
Go to the Top
Videos
- full length DVD called “Hope & Cope”
- Excellent video & article about the progression of symptoms & treatments for MD
- Quite a few videos covering many aspects of AMD
- DVD videos about wet and dry AMD
- Hope & Cope: Living Well with AMD
- Explores research on treatments and potential cures for age-related macular degeneration (AMD)
- Public Service announcement American Macular Degeneration Foundation
- What is Macular Degeneration by AmerraMedical, a medical communications company
- What is Macular Degeneration, a video from the Macular Disease Foundation of Australia
Go to the Top
Personal stories of living with AMD
- The Experiences of a land surveyor in Australia who lost the central vision in one eye to MD and then 20 years later, lost the central vision of his other eye; lots of links to other webpages
- One of the first people to have a trial retinal transplant (UK) published Feb. 2016
- LONG list of people from all over the world who are living with Stargardt’s Macular Dystrophy which is very much like AMD but usually diagnosed at an early age.
- What Role Does Disability Play in Your Identity?
Go to the Top
Online newsletters
- American Foundation for the Blind provides newsletters for various topics
- WebRN Macular Degeneration News
- American Macular Degeneration Foundation: News about MD
- Lighthouse Guild: E-News
- You’ll need to create an account: VisionAware: Join the VisionAware Community
Go to the Top
What is AMD?
- Click here for “What do I do if I get a diagnosis of AMD?”
- Video: Animation of AMD, wet and dry forms
- from the NHS in the UK: not only a thorough explanation of all aspects of AMD but also real stores, clinical trials and a community group.
- A comprehensive and more technical article
- American Macular Degeneration Foundation: Learn, Home & Thrive
- AMD Macular Degeneration Partnership: Overview and Statistics
- About AMD
- Medical News
- Taking a Closer Look at AMD (pdf file)
- 8 Things I Wish People Understood About My Vision Loss
Wet Form
- Wet AMD types & risks for developing it in the second eye
- Wet AMD–the whole page is good. There are excellent diagrams that explain the process in the section ‘Wet ARMD – exudative/leak’
- Video that explains how wet AMD progresses and how the injections work.
Dry Form
- Dry AMD–the whole page is good. There are excellent diagrams in the section ‘The Retinal Changes in ARMD’
- There are different types of drusen and they mean different things
- “Arm Yourself for Dry AMD”, January 2017 article for Optometrists; contains the most up-to-date knowledge of dry AMD
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
Go to the Top
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.
- Article with information about risk factors, treatments, etc.
- Macular Degeneration in Young Adults, People & Kids
- Great list of links re. SD
- 2011 Expert Answers on SD‘
- Blog: Living with SD
- One of many YouTube videos on SD
- This article explains the genetic aspect of SD
Go to the Top
The Science Stuff
- Here’s a refresher course in eye anatomy with a diagram and definitions
Role of RPEs
Geographic Atrophy
Go to the Top
Symptoms
- National Eye Institute/NIH: Facts about AMD
- Mayo Clinic: Symptoms and possible causes
- About geographic atrophy
- Good description of the stages
- Explanation of advanced AMD
Charles Bonnet Syndrome/Visual hallucinations
- Chuck Bonnet and the Hallucinations
- Charles Bonnet Syndrome: Why Am I Having These Hallucinations?
- Why am I seeing what I am seeing?
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:
Go to the Top
Risk factors
- January 2017 published, article “Nutritional and Lifestyle Interventions for Age-Related Macular Degeneration: A Review”
- Diet, Exercise, Smoking Habits and Genes Interact to Affect AMD Risk
- Comprehensive list of common possible causes
- Risk factors you can and can’t change
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
- Reducing high blood pressure is important but some medications to lower it can make vision loss worse
- List of references to consumer comments about high blood pressure and AMD
- Research study linking hypertension to AMD, risk factor for wet AMD; indicates a person with hypertension 1.5 times more likely to develop AMD than those with normal blood pressure
- Which comes first: high blood pressure treatments or AMD?
Uncontrolled high cholesterol
- High cholesterol linked to AMD, also some evidence that Statins to treat it can help prevent it
- Can statins help prevent AMD?
- A handful of walnuts a day can prevent heart disease, reduces cholesterol.
Smoking
- Biology of Smoking and AMD
- Personal story of person who smoked and had AMD
- Vision loss, blindness and smoking, not only AMD
Blue Light
- Click here for “Why should I be concerned about ‘blue light’?
- What can I do to protect my eyes outdoors? Includes a detailed explanation about the different types of light
- Violet and blue light of the UV spectrum worsen AMD. Sources: sun (main source), computer screen, phone & other mobile device screens, full-spectrum lighting (ie, used to treat Seasonal Affective Disorder (SAD), fluorescent lighting, LED lights, high intensity mercury vapor lamps (for night sports and high-crime areas), and xenon arc lamps.
- Click here for article with references to research on blue light.
- There’s concern for how much time we spend on computer and other digital devices.
- Be careful after cataract surgery since implanted lens may not block UV light as our natural lens.
Eye Color
- People with light-colored eyes (ie light-colored iris) are more likely to develop the dry type of AMD. This is because light-pigmented eyes offer less protection from damaging UV light.
Aspirin & other medications
- for those with wet AMD, aspirin MAY cause them to bleed more because it interferes with clotting. But talk with your doctor before you stop taking it. Many doctors believe that the benefits of taking aspirin outweigh the risks.
- Highlight: Is there a connection between drugs taken for osteoporosis and wet macular degeneration?
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
- Researchers found link between AMD and AD that is the lack of enough specialized proteins to remove waste products in the retina and the brain. March 2016
Go to the Top
Treatments
- FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
- Recent study (published May 2016) about the status of AMD before and after anti-VEGF injections.
- Medications injected into the eye and lasers to seal abnormal blood vessel growth only
- Comparing the medications used in injections
Telescopic implants
- 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.
Are there new treatments in the pipeline?
- Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)
- Are there new treatments coming? March, 2016: for wet AMD, researchers are working on a slow-release medication and possible new drugs.
- Sustained release treatments
- Article from 2014 with overview of advances to that point & discussion of what was in the pipeline then
Vitamins (see Self Maintenance/Self Care section below)
- Warning about zinc in the AREDS formulas Individual reactions to zinc, it can cause vision to worsen in people with certain genetic makeup (there’s a test available) March 2016
Go to the Top
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
- Video: what are stem cells and what can they do?
- 9 things to know about stem cell treatment
- Article from Australia, good description of where stem cells can come from
- Article Oct. 2015, success with stem cell transplant in UK clinical trial
- Stem cell clinical trials in the UK
- Stem cell surgery successes and legislation in the US
Go to the Top
Coping with low vision
Low Vision Aids
- Click here for a video which is an overview of assistive technology
- Click here for “Top 10 Low Vision Aids for AMD”
- Click here to go to computer/tablet/phone aids/apps
- 5 Ways to Browse the Web if you Are Blind or Visually Impaired
- Guide to buying low vision aids
- What kinds of low vision aids are available?
- Be My Eyes is an iPhone app where you connect to a ‘live’ person to help you
- A great overview of assistive technology for those with low vision from IPAT (North Dakota Interagency Program for Assistive Technology).
- Top 10 Products for Independence
- What you need to know about magnification
Wearable Technology
- coming soon!
Suppliers of low vision aids
- Enhanced Vision, you can have a catalog sent to you
- Suppliers of low vision products
- Zoomax assistive technology for those with vision impairments.
Financial Help
- A comprehensive list of sources for help including from companies who make Avastin and Lucentis.
- Help from the company who makes Eylea.
- An organization called GoodDays in the US
- In the US, you may qualify for Social Security Disability. Click here for the details.
- Financial help for injections: Patient Access Network (PAN)
- Click here for information about financial help for injections
- How can I get a free exam and glasses in the US?
Sunglasses
- Type of sunglass lenses: UV filter (blue blocker), clip-on, regular, wear over glasses
- What can I do to protect my eyes outdoors? includes an explanation about the various types of light
- Search results amazon.com ‘sunglasses filter out blue light’
- Things to look for in sunglasses
- This site says that they will give you a free pair of Cocoon sunglasses for participating in their study (I haven’t checked them out)
- Finding blue-blocking sunglasses in the UK
- Find online at Amazon for the UK. Cocoons are available, other brands as well often called ‘driving glasses’
- Serengeti Technology sunglasses can be ordered online
- Oakley is another brand that can be ordered online & possibly in the stores
- Another source for Haven and other brands
Lamps
- Better lighting for AMD, best types of light and hints for using them
- New technology lamps
- More lamps, better bulbs
- Lots of tips for better lighting
Transportation
- A website for the US where you enter your zip code and transportation options for your area will be shown.
Bioptic Driving
Depression
- AMD & Depression
- Reduce Depression
- Rehabilitation helps prevent depression for people with age-related vision loss
- Dialectical Behavior Therapy (DBT) used successfully by the author (Sue) of the pages on this website.
Checking vision
- Overview of how to check your vision regularly “How do I know if my vision changes?”
- “When should I get my eyes checked?”
Amsler Grid
Go to the Top
Self maintenance/self care
- An overview of self-maintenance
- General hints for coping when reading, writing, using the TV and appliances, etc.
- Coping with one good eye
Low vision rehabilitation
- Overview of types of low vision rehabilitation
- Click here for “Is there any way I can better use the vision that I have?”
- Click here for “Who are the people who will help me?”
- Eccentric Viewing: You can teach yourself how to use your peripheral vision to read the printed page with a technique called Eccentric Viewing
- Click here for what is called the Steady Eye Technique in the UK
- Click here for “How can I adapt my home so I can be safe and independent?”
Vitamins/Supplements
- Post: Should I take AREDS or AREDS2 vitamins?
- Click here for an eye doctor’s experience with a patient who ‘prescribed’ the AREDS2 vitamins himself.
- How much sunlight do I need to get enough vitamin D? Click here and scan down the page to the section Vitamin D.
- Warning about the AREDS supplements from the Macular Degeneration Association
- What you need to know about your AREDS supplements
- Where to buy vitamins, alternatives to the exact AREDS2 formulation
- Research in Ireland into Nutritional Supplement based on plant pigments (carotenoids)
- saffron ‘cures’ AMD in research study, Feb. 2013
Nutrition
- Macular Degeneration Diet and Prevention Plan by Dr. Stuart Richer, OD, PhD, Ocular-Nutrition Laboratory in DVA Medical Center Eye Clinic, North Chicago, IL
- Eyefoods website & Facebook page:
- Eat For Your Sight Cookbook
- Good Nutrition and Eye Health
- Anti-inflammatory diet because inflammation has been linked to macular degeneration
- Food high in Lutein and Zeaxanthin
- Eat right for good general health & eye health
- Good page talking about various dietary recommendations including anti-inflammatory, high Omega-3 and rich antioxidant
- Article warns of eating artificial fats to AMD (talks about risk factors)
Exercise/Activity
- Blind Yoga: CDs for sale
- BlindAlive: audio-described workouts for sale, several delivery methods
More to come, you can check out these posts now
Video: Overview of Assistive Technology for People with Low Vision
Highlight: How do I use Zoom for Apple products?
Highlight: What about Apple’s accessibility features?
News: Top 10 Low Vision Aids for AMD