macular degeneration, macular, diagnosis AREDS2 – My Macular Degeneration Journey/Journal

Tag: AREDS2

Should I take eye vitamins? What’s AREDS2?

QUESTION: Should I take eye vitamins? What’s AREDS2?

(Updated October 2022)

This only applies to those with Age-related macular degeneration (AMD or ARMD) not any other form of macular degeneration (MD).

This is NOT medical advice. It is information for you to use:
– to do your own research
– to ask questions of your eye specialist
– to ask questions of your medical doctor.

The Basics

1. What is AREDS and AREDS2?

They are NOT brand names.

AREDS stands for Age-Related Eye Disease Study. There were 2 studies: AREDS results released in 2001; AREDS2 results released in 2013.

2. What was the purpose of the studies?

The purpose of these studies was to see if a specific combination of vitamins and minerals would slow the progression of AMD to the advanced forms of wet or advanced dry/geographic atrophy. They were both conducted by the US National Insititute of Health (NIH) National Eye Institute (NEI). The Bausch & Lomb company provided the formulations & financially supported both studies. Click here to read the information provided by the NIH NEI about AREDS and AREDS2.

3. What were the formulations?

Both studies used 500 mg of Vitamin C and 400 IUs of Vitamin E. In the first study (AREDS or AREDS1), they used 15 mg of beta carotene, a carotenoid. When research showed a connection between beta carotene and lung cancer in smokers and former smokers, beta carotene was removed in AREDS2 and replaced with 2 other carotenoids: 10 mg of lutein and 2 mg of zeaxanthin.

Both studies included zinc: AREDS used 80 mg of zinc. In AREDS2, there were 2 groups, one with 80 mg of zinc and a second with 25 mg of zinc. Both groups had the same posotive results, but because AREDS2 did not have a true placebo group, the NEI says that the ‘gold standard’ for the formulation includes 80 mg of zinc. Because zinc removes copper from the body, copper was included: 2 mg of copper with 80 mg of zinc, 1-1.2 mgs of copper with 25 mg of zinc.

Bausch & Lomb has the patent to both the AREDS & the AREDS2 formulations with 80 mg of zinc. Because of that, their PreserVision products are the only ones with 80 mg of zinc. After AREDS2 results were published in 2013, many companies marketed their ‘AREDS2-based’ products with the same formulation but with 25 mg of zinc.

4. Who in the studies did they help?

They were effective in slowing down the progression to wet AMD (but not geographic atrophy) for some people with:

a) intermediate dry AMD.
b) wet AMD in one eye but not the other.

5. What about the rest: those who do not have AMD, have early AMD, have wet AMD in both eyes or have another form of macular degeneration such as Myopic Macular Degeneration (MMD) or Stargardt’s Disease (SD).

a) They were NOT tested on those who do not have AMD or have wet in both eyes.

b) They were tested on those with early AMD in AREDS but not AREDS2 because they showed NO benefit in the 6+ years of the study.

c) They’ve NOT been tested on those with another form of macular degeneration.

6. What’s the harm taking them if they weren’t tested on people like me?

Some of the ingredients are high doses. There’s been no research on whether taking them if you don’t need them is safe or effective. Would you take a blood-pressure-lowering medication if you did not have high blood pressure?

7.  What is the controversy about zinc in AREDS and AREDS2?

A 2018 study using the genetic profiles of some of the participants of the AREDS study (the first one where 80 mg was used) found that for 15% of the people with a specific genetic makeup (I call it being ‘zinc sensitive’), their AMD progressed faster than those in the study with a different genetic makeup.

8. I’ve heard not everyone agrees with those findings. What’s up with that?

This finding has been disputed by the NIH NEI researchers involved in the AREDS and AREDS2 research. The NEI, some eye specialists, and the AAO (American Academy of Ophthalmologists) take that side and say that genetic testing is NOT necessary because there is no difference in effectiveness of the 80mg of zinc based on genetics.

The opposite view is taken by the researchers involved in the 2018 and prior research. The genetic testing they used in that study and previous studies is available through your retinal specialist by the ArcticDX company.

9. My stomach hurts when I take PreserVision. Why would that happen?

The National Institute of Health’s Office of Dietary Supplements says that the upper tolerable limit of zinc is 40 mg.  According to their page, some of the signs of too much zinc are “nausea, dizziness, headaches, upset stomach, vomiting, and loss of appetite. If you take too much zinc for a long time, you could have problems such as lower immunity, low levels of HDL (“good”) cholesterol, and low copper levels. Taking very high doses of supplemental zinc can reduce your body’s absorption of magnesium.”

References

AREDS Results. ‘A Randomized, Placebo-Controlled, Clinical Trial of High-Dose Supplementation With Vitamins C and E, Beta Carotene, and Zinc for Age-Related Macular Degeneration and Vision Loss’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1462955/

AREDS2 Results. ‘Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial.’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369607/

 

go back to frequently asked questions

AREDS/AREDS2: One Bite at a Time – Bite 2

Continued from BITES

Scientific Evidence From the AREDS & AREDS2 Studies
AREDS
  • Which participants in the AREDS study benefited?
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • The numbers:
    • 25% less likely when they took the antioxidants (Vitamin C, Vitamin E, Beta Carotene) and 80 mg Zinc.
    • 17% less likely when they took just the antioxidants, no Zinc.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • What became the PreserVision formulation from the study that became available in 2001? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc) and 15 mg beta carotene.
AREDS2
  • Which participants in the AREDS2 study benefited? Just like in the AREDS study:
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • There were no participants who did not have AMD or who had early AMD.
  • The numbers:
    • It’s not easy to break down the results as was done above for AREDS.  There was no placebo group so everyone in the study got some kind of treatment.  The groups who had the most benefit took the AREDS formulation of 500 mg Vitamin C, 400 IUs Vitamin E but without beta carotene (high risk of lung cancer). Lutein & Zeaxanthin were substituted.  There were 2 groups who took this formulation but different doses of zinc: one group got 25 mg of zinc and one group got 80 mg zinc.  Both groups did equally as well.
    • There were no participants in the group who had early AMD because the previous study (AREDS) did not find any benefit for them.
  • What became the PreserVision formulation from the study that became available in 2013? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc), 10 mg lutein, and 2 mg zeaxanthin.

Next: Are There Risks to Taking AREDS/AREDS2?

AREDS/AREDS2: One Bite at a Time

First, we need to talk about how AMD starts and progresses. Also, I’ll introduce some terms about the AREDS/AREDS2 supplements.

We cannot tell you if you should take the AREDS/AREDS2 supplements. We can only give you the information for you to make an informed decision.

Facts about AMD – for more information, watch this 4 minute video.
  • Everyone’s rate of progression of AMD is different. There are many risk factors, and everyone has a different combination of them. If the risk factors were letters of the alphabet, you may have A, C, F and Z. Another person may have A, R, and T.
  • I used the letter A in both examples because we all have a genetic makeup which in determined partly by heredity but includes other genetic factors as well such as gene mutations. For a simple explanation of genetics, read The Basics of Genes and Genetic Disorders.
  • Genetics plays a big factor in AMD. In a large study of twins including elderly twins, they reported that “Genetic factors play a substantial role in the etiology of AMD and associated macular characteristics, explaining 46% to 71% of the variation in the overall severity of the disease. Environmental factors unique to each twin also contribute to the occurrence of this disease.”
  • Although having a first-degree relative with AMD (parent) increases a person’s risk of developing AMD, not everyone whose parent has or had it will also develop it.
  • Risk factors are NOT causes.  A risk factor is something that increases the likelihood of a disease to develop. A cause is something that if it is there, you have the disease. We know some of the risk factors for AMD, but we don’t yet know the cause.
  • Everyone who has AMD started with the dry form. Some people don’t get diagnosed until it has turned to the wet form.
  • The dry form usually progresses slowly, but that is not always the case.
  • The stages of AMD are early dry, intermediate dry, advanced AMD which can be wet or advanced dry which is called geographic atrophy.
Basics of AREDS/AREDS2 Research – for more information about AREDS & AREDS2, read this article.
  • AREDS stands for Age-Related Eye Disease Study.
  • There were 2 studies: AREDS ran from 1992 to 1999 (7 years). The results were published in 2001. There were 4,757 people enrolled ages 55-80 years old (mean age 69), 56% were women, 96% were white. DNA was collected. The study was conducted by the NEI and funded by Bausch & Lomb.
  • AREDS2 started in 2006 and ran for 5 years. The results were published in 2013.  There were 4203 people enrolled in the study, ages 50-85 (mean age 74), 57% women, 97% white. The study was conducted by the NEI and funded by Bausch & Lomb.
  • There is only 1 brand of an AREDS or AREDS2 supplement that has the exact formulation as was used in the study: Bausch & Lomb’s PreserVision because they hold the patent.

Next:  SCIENTIFIC EVIDENCE FROM THE AREDS & AREDS2 STUDIES

Scientific Articles for AREDS & AREDS2

AREDS results:  Randomized, Placebo-Controlled, Clinical Trial of High-Dose Supplementation With Vitamins C and E, Beta Carotene, and Zinc for Age-Related Macular Degeneration and Vision Loss

AREDS2 results: Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial

Other References

The US Twin Study of Age-Related Macular Degeneration: Relative Roles of Genetic and Environmental Influences

What’s the Difference?

Hello. Spent a good part of yesterday working on getting my Wi-Fi connection back. My friend says she enlists the aid of the archangels and the saints. Supposedly Hilarion is the patron saint of technology. How a guy who, according to Wikipedia, spent his life wandering in the desert has anything to do with my Wi-Fi is beyond me. Of course, Hilarion sounds like hilarious and tech and I are a cosmic joke….

But before things went dark, Lin sent me a list of things the Facebook members thought would be of concern for those newly diagnosed. At the top of the list was the difference between dry and wet AMD.

I am going to tackle this sans references because, well, I think I got it. But, if I don’t, feel free to call me on it.

To begin with, both dry and wet AMD start out as dry. With the drusen accumulating between your retinal pigment epithelial cells and their food source, the RPEs start to die.

http://patient.info/health/age-related-macular-degeneration-leaflet

RPEs? Those are the servant cells to the photoreceptors. The photoreceptors are the cells that change light energy into chemical energy and then into electrical energy so your brain can see. Without their servant cells, photoreceptors died.

The death of cells and withering of a body part is called atrophy. In advanced dry AMD that is pretty much all that happens. RPEs die. Photoreceptors die and we loose part of our vision. Advanced dry AMD is called geographic atrophy (GA) because the pattern of living and dead retinal cells once looked to someone like oceans and continents on a map.

That is GA. It is generally a slow process. Vision loss is mild to moderate. In my inelegant terminology, your macula just sort of rots away. Yippee.

Now, that is not exactly what happens when you develop wet AMD. In wet AMD, the way I conceptualize it, your RPEs and photoreceptors send out messages begging for more supplies. Excuse me! We are dying here! The body responds by building more supply routes. These are blood vessels. However, these new vessels are substandard products and they leak. Those of us with wet AMD have eye bleeds.

Wet AMD is clinically called neovascular. Neo for new and vascular for blood vessels.

Bleeding in and about the retina causes cell death. You lose cells and vision quickly. One of the commandments of AMD is thou shalt not ignore an eye bleed! Wet AMD only happens in about 10% of us but it accounts for about 90% of the severe vision loss in AMD.

Now, treatments. The short answer for dry AMD is there are none. They are getting closer and I am hopefully but right now the answer is still none.

The AREDS/AREDS2 formula has been proven effective in reducing the rate of progression from dry to wet. Ask Lin. She is our expert. AREDS as a topic makes my head hurt. To my knowledge supplements do little to stop the slow progression of dry AMD. [Lin/Linda here: I’ve put some information about this at the end.]

The treatment for wet AMD is anti-VEG-F shots. VEG-F is the chemical messenger that calls for new blood vessels. Shut that guy up and there is less that can bleed. There are several different types of “eye shots”. Some work better for some people. Others work better for other people. Work with your doctors on that.

That is the difference between dry and wet AMD according to me. Hope it helped.

Written March 13th, 2018

For more information, here’s a good place to go: The Science of AMD.  I highly recommend the 2 videos on this page as well as the other information.

Lin/Linda: OK, more about AREDS/AREDS2.  The short answer is that they HAVE been shown to be effective in reducing the risk of wet AMD but only for those with intermediate dry AMD or advanced wet or dry AMD in one eye but not the other.  There is an issue about one’s genetic makeup in regard to taking the high dose of zinc in the original formulation (80mg).  For some people with a specific genetic marker, taking that much zinc can cause one’s AMD to progress FASTER to wet than those without that marker.  More about this at AREDS/AREDS2: A Guide where you can get more about the short answer, a link to a page where there’s “If you have…” which will tell you if the AREDS/AREDS2 supplements have been studied or not for the stage of your eyes & whether they’ve helped, and a link to 6 pages with details about the research that produced these supplements.]

Continue reading “What’s the Difference?”

Advanced AMD (wet or geographic atrophy) in both eyes

Advanced AMD (wet or geographic atrophy) in both eyes

No one with this combination was included in either AREDS or AREDS2.   Some doctors tell their patients with geographic atrophy (advanced dry AMD) in one or both eyes to take the supplement to prevent their eyes from progressing to wet AMD (it’s possible to have geographic atrophy AND wet AMD).

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.
References

Go back to The Guide

 

 

Intermediate AMD in one eye/advanced (wet or geographic atrophy) in the other eye

Intermediate AMD in one eye/advanced (wet or geographic atrophy) in the other eye

Studied in AREDS & AREDS2: showed reduction of risk of developing advanced AMD over 5 years.

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.
References

Intermediate AMD in both eyes

Intermediate AMD in both eyes

Studied in both AREDS & AREDS2: showed reduction of risk of developing advanced AMD over 5 years.

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.
References

Go back to The Guide

Early AMD in one eye/intermediate or advanced (wet or geographic atrophy) in the other eye

Early AMD in one eye/intermediate or advanced (wet or geographic atrophy) in the other eye

AREDS: showed reduction of risk of developing advanced AMD over 5 years.

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

 

References

Early AMD in both eyes

Early AMD in both eyes

Only studied in AREDS. Not enough participants to generate a recommendation. Perhaps results of Awh, Zanke and Kustra (2017) may apply but it has not yet been studied.  The study found that those with a specific genetic makeup may be harmed by taking the antioxidants (no zinc).  See reference below.

There were no participants with early AMD in AREDS2.   Some eye doctors recommend that those with early AMD in both eyes take the AREDS or AREDS2 supplements.  Please make sure that you discuss the benefits versus the risks (ie, interactions with other medications and/or supplements) with your eye doctor.  If you decide to take the supplements, please read the notes below and talk to your medical doctor about them.

  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.
References

Go back to The Guide

Intermediate or advanced (wet or geographic atrophy) in one eye/No AMD the other eye

Intermediate or advanced (wet or geographic atrophy) in one eye/No AMD the other eye

AREDS: showed reduction of risk of developing advanced AMD over 5 years.

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

 

References

Go back to The Guide

Early AMD in one eye/no AMD the other eye

Early AMD in one eye/no AMD the other eye

There were not enough participants in AREDS to a generate a recommendation. Perhaps results of Awh, Zanke and Kustra (2017) below may apply but it has not yet been studied. The study found that those with a specific genetic makeup may be harmed by taking the antioxidants (no zinc). There were no participants with early AMD in AREDS2.  If your doctor has recommended that you take the supplement, see “Early AMD in both eyes” in The Guide.

References

Go back to The Guide

No AMD Both Eyes

No AMD Both Eyes

Studied in AREDS only (no participants without AMD were included in AREDS2), participants with this combination were put in a separate part of the clinical trial to study the effect of antioxidants on cataract formation where half got a placebo & half got the antioxidants only (no zinc). The antioxidants are Vitamin C, Vitamin E and Beta Carotene.  In 2017, AREDS data from the cataract part was studied by Awh, Zanke and Kustra (2017) and they concluded that taking these high-dose antioxidants may harm those with a specific genotype.  Because of that, the recommendation from study is to NOT take the AREDS or AREDS2 supplements if you do NOT have AMD.  For more information about genetic testing, see References below.

References

Go back to The Guide

Too Much of a Good Thing

by Cora Lyn Sears (see her biography at the end of this page)

2016 was a bad year. In the Spring I lost my hair, in the Fall I was diagnosed with wet AMD. How much worse could it get?

About 11 years ago I was diagnosed with mild AMD in both eyes, and took the Vitalux brand AREDS2 eye vitamins faithfully twice a day. (my mother lost her vision to AMD).

At my regular optometrist appointment last Fall it was determined one eye had advanced to wet. I was devastated! I hadn’t noticed much change in my vision, except I needed slightly more light to read and the reading portion of my progressive lenses seemed to have gotten smaller. The Amsler Grid still showed the same few wavy lines and few very light ‘puffs of smoke’ but nothing terrible. The speed of what followed was a bit scary – an almost immediate appointment with a retinal specialist followed by my first injection the next day.

Before this I had known of the injections for wet AMD but hadn’t thought much about them, thinking incorrectly a few injections would stop it almost permanently.

To date I’ve had the first three injections followed by the OCT testing which showed bleeding still happening. Then two more and another test. Still bleeding. Now on my next group of three.

I had begun researching and discovered your Facebook page and website, spending more time online than I thought possible. The more I read, the more I needed to read. The links to articles about the amount of zinc in my eye vitamins being a possible problem led me to search for the ones with less zinc, which were actually not that easy to find. Someone on your Facebook page suggested Walmart, which is where I finally bought them and switched in the late fall. [Lin/Linda: there are several options from Walmart, only PreserVision have the exact ingredients from the AREDS2 research study.  Click here to see what’s available.]

Now the other part:

Last spring I started losing my hair and within three weeks I was completely hairless. Alopecia universalis!  I tried everything my doctor or I could find with no success. An appointment with a dermatologist confirmed my worst suspicions that this was permanent. Apparently an autoimmune problem. Zinc enhances immunity, right? And I had been overdosing on it for over 10 years. So less zinc should help the autoimmune caused hair loss, shouldn’t it?

But then why is so much zinc in the AREDS2 formula when AMD is connected to the immune system as well?

In January I grew a few eyelashes, then came a few baby fine eyebrow hairs. Now, 14 months after losing my hair and seven or so months after cutting down the amount of zinc, I am starting to see a tiny bit of new growth on my head – only perhaps a few dozen or so, but it’s a start.

It’s amazing how everything in our body is connected and works in harmony, until it doesn’t.

An afterthought… Use the Amsler Grid by a window, not in the bathroom. I saw more wavy lines and puffs of smoke there than I had seen in the bathroom.

written July 23rd, 2017

I’m a healthy 70 year old woman. That’s hard to write as I really still feel 40. I live in Victoria, a beautiful city on the west coast of Canada. I’m divorced with two children and one older teenage grandson. I hike about 5 miles three or four times a week with a wonderful group of like-minded women. I’m a retired journeyman painter with varied creative interests such as sewing and photography. I love to travel, whether a road trip or something farther afield. I’ve followed a low-carb diet for years. I’ve had both hips replaced due to arthritis and sometimes I think if this was 50 years ago, I’d be sitting in a corner in a wheelchair going blind.

 Back to Our Guest Authors: Their Stories

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

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:

I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

I Have Macular Degeneration…Now What?

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.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

News: September 20-21, 2016

These are the links shared in the Facebook group for these dates.

News: August 30-31, 2016

 

Highlight: Why are you taking that?

June 24, 2016

I have published information about the AREDS/AREDS2 supplements in the past.  In the Facebook group, we’ve discussed the studies and the pros and cons of taking the supplements. Here’s the text of an article that I hope will clarify some of the concerns that have been expressed by eye professional.  The link to the article is at the end of this post.

A long-time patient presented for an exam the other day. This is a patient that I look forward to seeing, as we have some common interests that we chat about during his exam. He remarked that he really enjoyed coming for his exam, because he felt secure in the advice I give him. However, he also stated he has recently experienced an unsettled feeling in having to find a new primary care provider due to insurance changes.

Here’s a bit of history on this patient: He is in his mid-50s, myopic, but otherwise enjoys normal ocular health. He has a family history of age-related macular degeneration, with both his mother and maternal aunt having undergone anti-VEGF injections for wet AMD. Several years ago I measured his macular pigment optical density and found it to be very low. I prescribed a triple carotenoid supplement (lutein, zeaxanthin and mesozeaxanthin), his pigment level is now well within normal range, and he reports taking this supplement without fail. In reviewing his medications, I noticed an addition, an Age-Related Eye Disease Study 2 formula. Knowing I had not prescribed this, I asked him why he was taking it.

“Well, I was at the drugstore and saw the box. It said that it was the No. 1 doctor-recommended brand, and the only clinically proven formula, so I thought I would take this along with what you prescribed. It is only a vitamin right?”

Only a vitamin… So this patient who has stated he trusts what I recommend for his eyes has fallen prey to misleading advertising on a product label at his local pharmacy.

I asked him a few questions.

GM: Did the label state that there is no clinically proven benefit to taking the AREDS2 formula for patients without AMD or even those with mild disease, only a moderate benefit for those with intermediate to severe disease?

Patient: Well, no, it did not say that.

GM: Did the label tell you that taking large doses of zinc have been linked to the development of Alzheimer’s disease and prostate cancer?

Patient: No, the label did not say that either.

GM: Did the label state that other studies have found that vitamins C and E have no effect on the development of AMD?

Patient: No.

GM: Did the label state that high doses of vitamin E have been associated with increased risk of heart failure?

Patient: No.

GM: Did the label state that if you have the wrong genetics, the high dosage of zinc might accelerate progression of AMD?

Patient: No.

GM: Do you think I would prescribe this for you?

Patient: No, definitely not. I am throwing away the bottle when I get home!

Interestingly, 2 days after this encounter I read an announcement regarding the release of an AREDS2 formula plus a multivitamin. It was stated that the reason for the combination formula was due to the fact that 90% of participants in the AREDS2 trial that took an AREDS supplement also took a multivitamin (which in itself may have skewed the results of the trial). The piece also stated that consumer feedback and data showed that more than 50% of people older than 50 use a multivitamin.

Unfortunately, supplements do not face the same FDA scrutiny as drugs do. Consider what is seen in TV ads for drugs. The announcer lists a litany of possible side effects that the drug being advertised may have, all the while showing images of the supposed patient taking the drug playing with their grandkids or walking along a beach. Now imagine if a commercial for an AREDS formula vitamin had to do the same. Patients would likely think twice while in the drug store vitamin aisle about self-prescribing. And perhaps maybe they would ask for advice from their eye care provider.

References:

The Age-Related Eye Disease Study 2 Research Group. JAMA.2013;309(19):2005-2015. doi:10.1001/jama.2013.4997.

Awh CC, et al. Ophthalmology. 2015;122(1):162-169; doi: 10.1016/j.ophtha.2014.07.049.

Christen WG, et al. Ophthalmology. 2012;119(8):1642-1649; doi: 10.1016/j.ophtha.2012.01.053.

Leitzmann MF, et al. J Natl Cancer Inst. 2003; 95:1004-1007.\

The article above is from: http://www.healio.com/optometry/nutrition/news/blogs/%7Bcc9498b0-051f-44c9-948d-dac572140054%7D/gary-l-morgan-od/blog-why-are-you-taking-that

News: CVS faces lawsuit for claim about a store-brand eye product

April 10, 2016

For those who have intermediate and advanced AMD, doctors recommend the nutritional supplement that came through 2 NIH research studies: AREDS & AREDS2.  If you haven’t already done so, please read our post What about those eye vitamins?

The only product that has all the nutrients from the AREDS2 study is made by Bausch + Lomb PreserVision. CVS put their store brand supplement next to this one and labeled it “comparable to ongoing study formula in AREDS2.” A 91-year-old woman was diagnosed with AMD and the doctor prescribed the PreserVision product but because of the label, she switched to the CVS brand because it was half the price.

It is NOT comparable.  To read the whole story, click here.

 

Resources

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

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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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

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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

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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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

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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.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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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:

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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

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

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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)

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Research/Clinical trials

 

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

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

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

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 

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

 

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