macular degeneration, macular, diagnosis Frequently Asked Questions – My Macular Degeneration Journey/Journal

Category: Frequently Asked Questions

What is Myopic Macular Degeneration?

Question: What is Myopic Macular Degeneration which is also called MMD?

Top of diagram shows normal eye & vision. Below, myopic eye and vision.

Myopic Macular Degeneration (MMD) occurs in some people who are severely shortsighted/nearsighted/myopic. In early myopia, which is very common, the shape of the eye changes from that of a baseball to that of a football. When that happens, the distance from the front of the eye to the retina in the back is longer which can cause problems focusing. At that stage, eyeglasses can help.

When it is severe, the elongation of the eye thins all areas of the retina including the macula. This thinning can cause retinal cells to atrophy which leads to loss of central vision. Severe myopia is called high myopia which can become pathological myopia. If it includes the macula, it’s called Myopic Macular Degeneration, MMD, Myopic MD, Myopic Maculopathy, or degenerative myopia. Many of these terms are used interchangeably.

Potential Problems from Pathological Myopia

The thinning affects the entire retina and can cause retinal tears, retinal detachment, cataracts, and glaucoma.

Myopic Macular Degeneration – CNV

Sometimes the thinning of the retina causes new, unwanted blood vessels to grow from the choroid (normal blood supply to the retina) to the area of the photoreceptors which give us sight. This is called CNV or Myopic CNV or Myopic Choroidal Neovascularization (that’s what CNV means). These new blood vessels are fragile and can leak blood or fluid.  It’s what happens in wet AMD and is sometimes called wet MMD.

You can find out more in the articles Myopic Macular Degeneration and What is Myopic Macular Degeneration?

MMD and AMD

Similarities
Where they are different is the cause:
    • MMD is caused by the action of the eyeball changing from an oval shape to a football shape. That ‘mechanical’ action causes the retina to thin including the area of the macula.
    • AMD is caused by some things we know (genes, age, lifestyle) but some things we don’t know yet.

Treatment

In MMD, AMD, diabetic retinopathy, other types of macular degeneration, when there is a build up of a protein called VEGF, the tiny blood vessels below the macula start to grow toward the RPEs & photorecepters which are both necessary for vision. VEGF is actually a good thing elsewhere in the body because it promotes healing. Not in the retina. This process is called CNV for Choroidal NeoVascularization
and can occur in any form of MD and other retinal diseases. CNV is treated with anti-VEGF injections. 
The word ‘wet’ – some people call CNV in MMD ‘wet’ MMD. In medical language, dry AMD is atrophic and wet is neovascular or exudative. Atrophic means ‘atrophied’ or ’tissue that has atrophied.’ Exudative refers to ‘exudate’ which is the fluid or blood that comes out of blood vessels. It’s because of the exudate/fluid/blood that the term wet AMD or wet MMD is used.

Supplements

The AREDS2-based supplements have not been tested in those with MMD because of the differences in causes. AMD is a disease process, whereas MMD is from a mechanical change in the shape of the eyeball.
Some people with MMD take lutein & zeaxanthin supplements and eat foods high in them because they build up the pigment in the macula which is thinned in MMD. I cannot, however, find any research to prove that this is of benefit.

Living and Thriving with MMD

Here is an interview with Dr. Bonnielin Swenor, from Wilmer Eye Institute at Johns Hopkins whose diagnosis of and journey with Myopic Macular Degeneration led her to her current position at Wilmer as Director of the Johns Hopkins University Disability Health Research Center and Associate Professor of Ophthalmology.

Research

The area of research of the most interest to those with vision loss from any ocular disease is that of stem cells being used to replace failing or dead retina cells. Most of the current research is focused on those with AMD because there are more people with AMD than MMD.

The best way to keep updated on all MMD research is to join the Facebook group ‘Myopic Macular Degeneration : Patients For a Cure’ (link is below). They are actively monitoring all research that is about MMD or could be applied to MMD especially that using stem cells. They were able to set up an online discussion with Professor Pete Coffey of the London Project to Cure Blindness. This is the video recording of that discussion: ‘Myopic macular degeneration and how to find a cure.’

Facebook Groups

If you have MMD, I welcome you to join our Facebook group where you can learn about the disease and how to manage your life with a visual impairment (if you have one). Most of our members do have AMD, but we have members with MMD as well. There are other groups specific to MMD (I don’t belong to the first one list, but I do belong to the second one):

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What’s the difference between the various eye professionals?

QUESTION: What’s the difference in the US between an optician, an optometrist, an ophthalmologist and a retinal specialist (RS)?

ANSWER: Briefly, a retinal specialist is an ophthalmologist who specializes in retinal disorders. An optometrist or an ophthalmologist is capable of diagnosing problems such as AMD, PVDs (Posterior Vitreous Detachment), cataracts, etc. An optician uses a prescription from an optometrist or ophthalmologist to ‘fit’ corrective lenses. Those are the terms used in the US – they are different in other countries.

Eye Doctors in the US: Who’s Who.

In the US, we have Optometrists (ODs), Ophthalmologists (MDs) and Retinal Specialists (RSes). For information about their training, please refer to ‘Assembling a Team of Macular Degeneration Specialists’ 

Notice it says ‘team.’ Many people have more than one eye specialist on their team.

Diagnosis of AMD

Any of them can DIAGNOSE dry and wet AMD.

Dry AMD

If the diagnosis is dry AMD (early, intermediate, advanced dry AMD/geographic atrophy), any of them can diagnose and monitor you. There are no treatments yet for dry AMD, so there’s nothing medically or treatment-wise an RS can do. ALL of them can counsel you as to diet, supplements, and other things you can do to hopefully slow down the disease process. Do they? THAT varies a lot as does the advice (especially regarding supplements). Not all RSes do this. We find you really need to do your own research in addition to considering the advice of your eye specialist.

Dry AMD often progresses slowly or not at all!!!! Only 10-15% of those with early dry or intermediate dry AMD progress to wet AMD. That means that 85-90% of the people with AMD do NOT need to see an RS to have injections. Injections are NOT inevitable!

If you are concerned that the Optometrist or Ophthalmologist is qualified to make an AMD diagnosis, you can ask if they have testing equipment such as for an OCT and camera with autofluorescence/FAF (big words, I know). They’ll know what they are.

If Dry AMD Turns to Wet AMD

If you start with Dry AMD under the care of an Ophthalmologist or Optometrist and it turns wet, they will refer you to an RS as soon as possible. They are able to get you a timely appointment with an RS for wet AMD or any emergency they can’t handle. Some of you may need a referral to an RS, others may not.

Do You NEED To See An RS?

Is an RS ‘better’ for all types of AMD? An analogy is if you have hypertension, which of course is serious as is AMD, it’s your primary doctor who monitors and treats it. If they feel that the situation is more serious, they’ll refer you to a cardiologist.

Often an RS will refer a patient whose WET AMD is stable back to their Optometrist or Ophthalmologist to monitor. If the condition advances, they’ll go back to the RS. RSes are often very, very busy.

If the diagnosis is WET AMD, it’s the RS you’ll need to see for treatment (anti-VEGF injections). Wet AMD needs to be treated ASAP. As I said above, often an Optometrist or Ophthalmologist can get you an appointment with one sooner than you can. Depending on your insurance, you may need a referral – or not.

If the diagnosis is uncertain or not obvious, you will be referred to an RS.

An Optometrist is often the one who first diagnoses AMD partly because many people think the symptoms are because they need new eyeglasses.

Of course there are cases of being misdiagnosed by an Optometrist or an Ophthalmologist, but it can happen with an RS as well. We have had examples of misdiagnosis by an RS.

Other considerations For Those With DRY AMD

Some people live where the options are limited, so the choice may be between an Optometrist or Ophthalmologist. You may have to travel to find an RS if you have wet AMD.

Personalities can come into play. With any medical field, there are ‘good’ and ‘bad’ doctors, or maybe doctors you feel more comfortable with. If you are seeing an Optometrist or Ophthalmologist and have dry AMD, you can see another Optometrist or Ophthalmologist. You don’t automatically need to see an RS.

It’s often the case where a practice has doctors of all 3 specialties, so it’s a ‘one stop shop.’

Eyeglasses and contacts

Both Optometrists and Ophthalmologists can prescribe them. Rses can, too, but they are often too busy. Sometimes they’ll have a technician deal with eyeglass & contact prescriptions.

Documentation for Disability Claims

Any of the 3 specialties can and do complete this documentation.

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What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Question: What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because they’ve not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

Question: “What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?”

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because the AREDS2 formulation has not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

1. There’s lots of research that says that the best sources of important nutrients are from food. Click here for a great article that covers each aspect of an Anti-AMD Diet including why the Mediterranean way of eating, flavonoids found in oranges and carotenoids like lutein and zeaxanthin and anti-inflammatories are beneficial.

2. Click here for a good video by an the eye specialist who covers the important aspects of an eye healthy diet including fish like salmon 2-3 times a week and a cup of spinach or other dark leafy vegetable a day, nuts regularly and keeping the carbs in the low range of the Glycemic Index (GI). His bottom line: If you don’t eat healthy, then consider supplements but always choose good foods first.

3. Professor John Nolan, Director of the Nutrition Research Centre Ireland, has been studying carotenoids for 20 years. His research found that we have 3 carotenoids in our macula (lutein, zeaxanthin, and meso-zeaxanthin; LMZ) in a clump of cells called macular pigment. Macular Pigment protects the rods and cones, our photoreceptors, from blue light, and also supplies antioxidants to them. Carotenoids come strictly from plants especially leafy green veggies and if we don’t eat them, we don’t have any macular pigment! We need a good and constant supply of LMZ. He found that at least 15% of the population is deficient in LMZ. He also found that although lutein comes from many foods, zeaxanthin is found in less foods, and meso-zeaxanthin only in fish skin and shellfish. Some people convert lutein to zeaxanthin and meso-zeaxanthin, but not everyone so supplementation with LMZ is a safe way to be sure we’re getting the LMZ we need for healthy pigment. Since the eye are part of the brain, what’s good for the eyes is good for the brain.

To learn about Dr. Nolan’s research, I recommend that that you listen to the September 3rd, 2021, podcast from BroadEye titled ‘Age-related Macular Degeneration, Supplementation, and Key Research Findings in the Field of Ocular Nutrition – Prof. John Nolan.’

Should I wear sunglasses? What kind are best?

Question: Should I wear sunglasses? What kind are best?

Answer: ABSOLUTELY you should wear them anytime you are outside even on cloudy days. They are not, however, all created equal.

Summary of what type of sunglasses are best

Choose frames that wrap around close to your face on the sides, bottom and top (either worn without glasses or as ‘fit overs’ worn over glasses). For flat or wraparound frames that don’t fit close to the face, an anti-reflective coating on the back side of the lens is recommended to reduce reflections into the eyes when bright light comes onto the face.

The lenses should filter out 100% of the UVA & UVB rays of the sun and be polarized. Just because they filter 100% of the sun’s rays does NOT mean they are polarized.

Polarized sunglasses can be worn indoors. However, if you want to look at a computer screen with them, you need to turn the device 90 degrees in either direction.

For normal conditions, the lenses should be a warm color such as amber, copper, or brown. They help reduce glare and improve contrast. These colors naturally filter out some blue light (also called HEV) of the sun which has been linked to AMD. The % of blue light/HEV blocked can vary by brand.

If you are often in foggy, overcast, dawn or dusk conditions, yellow lenses are helpful. Be careful when you read about ‘driving glasses’ with yellow lenses. They are too dark for night driving – clear is best – and too light for day driving.

For low light environments, a clear lens is the best.

If you are frequently in environments where there’s a lot of reflected light such as from snow or from water, a mirror finish is recommended. There are various colors of mirror finish, each with different characteristics.

If your environment changes regularly, you may want to have several pairs of sunglasses. One type of lens cannot handle them all.

We recommend that you purchase your sunglasses from a source where the specifications can easily be found to tell you how much blue light is being filtered. Also, they should be scratch resistant if possible. Some companies have great warranties. If you are not buying them where you can try them on, make sure that you can return them for free or at minimal cost.

Why and What

Why

Everyone should wear sunglasses. Get small children in them very, very early, and they will always use them.
Over 80% of lifetime sun exposure occurs before age 19. That doesn’t mean it’s too late to start wearing sunglasses!

People with AMD already have inflammatory damage to the retina and need to reduce the additional oxidative damage from sunlight by wearing proper sunglasses.

Eyes with light-colored irises also have lighter pigmentation in the retina and are more susceptible to light damage. That doesn’t mean that dark-colored irises filter out damaging light so that you don’t need to wear sunglasses. It means that it’s especially important for those with light-colored eyes.

People who have had cataracts removed let more light INTO the eye because the aging brunescent [means brown] lens has been replaced with a clear implant.

Do you wear contacts that have a UV blocking coating You still need to wear sunglasses because the only part of the eye protected is behind the lens. Also, they don’t filter out the blue light of the sun that has been linked to the development and progression of AMD.

Taking certain medications can make your eyes more susceptible to light damage.  In general, any medication that can make your skin more sensitive to light can make your eyes more sensitive to light. Also, some birth control & antibiotics can do that.

What

Lenses

They should filter out 100% of harmful UVA/UVA rays of the sun and as much blue light as possible:

You can, of course, get them from your optometrist where the options are presented to you & recommendations are made.

How do you know for sure if they do before you buy them: read the tags on them or the description online if that’s where you are buying them.

Coatings

Polarized Lenses

They have a laminated filter on them to block a portion of light from passing through to the eye. Polarized sunglasses were designed for settings in which light is intensified by reflecting off flat surfaces, increasing the amount of light and making it very difficult to see clearly. They are recommended for driving during the day.

Anti-reflective coating on the back of the lens

If your sunglasses don’t wrap around close to your face, try to get an anti-reflective coating on the back of the lens. It works to reflect any light that bounces off of the back of the lens and that goes into your eyes making it harder to see and causing more glare.

Night driving glasses

Although they are advertised more and more, they aren’t really a good idea. The article ‘Night driving glasses: Help or hoax?The article ‘ talks about a study where people wore yellow or clear lenses and were tested to see how they reacted to pedestrians. “Our data suggest that wearing yellow lens glasses when driving at night does not improve performance in the most critical task: detection of pedestrians,” the study authors said.

GO BACK TO FREQUENTLY ASKED QUESTIONS

What can I do for computer/digital eye strain?

QUESTION: What can I do for computer/digital eye strain?

ANSWER:
In a previous FAQ, I listed the symptoms of computer eye strain which are caused by staring at an electronic device for a long time. The symptoms are:

  • Sore, tired, burning or itching eyes
  • Watery or dry eyes
  • Blurred or double vision
  • Headache
  • Sore neck, shoulders or back
  • Increased sensitivity to light
  • Difficulty concentrating
  • Feeling that you cannot keep your eyes open
  • It’s not from the blue light (the research done on this is only being done on mice). Blue light has only been linked to causing an interruption in the sleep cycle (more about that in a comment below).
Will this cause permanent damage to my eyes in other ways?

From the Mayo Clinic article: ‘Eyestrain doesn’t have serious or long-term consequences, but it can be aggravating and unpleasant. It can make you tired and reduce your ability to concentrate.’
and
“Extended use of computers and other digital devices is one of the most common causes of eyestrain. The American Optometric Association calls this computer vision syndrome, or digital eyestrain. People who look at screens two or more hours in a row every day have the greatest risk of this condition.”

What can you do to alleviate the symptoms from computer/digital eye strain?

From the article ‘Computer eye strain: 10 steps for relief’:

  • make sure you have proper lighting. We know that those with AMD need more light than before;
  • minimize glare. Is there light coming in from outside that is reflecting on your screen? You can close the curtains to reduce that. You can get a non-glare cover from your screen;
  • how old is your computer monitor? LCD screens are easier on the eyes;
  • adjusting the display settings: is the text large enough? Is the screen bright enough?
  • blink more often! Every 20 minutes, blink 10 times by closing your eyes as if falling asleep (very slowly). This will help re-wet your eyes;
  • exercise your eyes: look away from your computer at least every 20 minutes and gaze at a distant object (at least 20 feet away) for at least 20 seconds. Some eye doctors call this the “20-20-20 rule.” Looking far away relaxes the focusing muscle inside the eye to reduce fatigue.
  • take frequent breaks;
  • is your workspace set up for ease of use?
  • Have you talked to your eye specialist about the coatings available for your eyeglasses?

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Should I buy ‘computer glasses’?

QUESTION: Should I buy computer glasses?

ANSWER
‘The Case For and Against Blue Light Blocking Glasses’ is an extensive article from a company that provides eyewear testing to companies that make them. The article starts: “What is blue light, what does the research say, and why should your company be in the know? We look at recent studies and weigh up all the facts to see if your blue light blocking glasses are doing what they claim in the sales pitch.”

It includes these sections:
– the sale pitch
– what are blue-light blocking glasses good for?
– digital eye strain, what the symptoms are
– current research
– Melatonin, Screens and A Good Night’s’ Rest
– How Do You Test Blue Light Blocking Lenses?

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I have wet AMD. Why does my doctor use one anti-VEGF injection not another?

QUESTION: I have wet AMD. Why does my doctor use one anti-VEGF injection not another?
ANSWER:
In this video, the doctor explains the similarities and differences between Avastin, Lucentis and Eylea. They all work extremely well, he says. The bottom line is that if you have wet AMD, you should be treated with one of them. Note that prices he quoted do not take into account a person’s insurance coverage.
[This video is only available on the Facebook page of Macular Degeneration Partnership, not on their website or on YouTube. You can only view them when on Facebook.]

I have AMD. What’s my chance of having vision loss?

QUESTION: I have AMD. What’s my chance of having vision loss?

This information is ONLY for AMD, it doesn’t apply to any other form of macular degeneration.

I don’t want to give people false hope, but I want to make sure that the risk for those with early or intermediate AMD is accurate. The large number of posts about wet AMD in our Facebook group does NOT mean that everyone will progress to it eventually.

Also, just because it’s called Advanced Dry AMD (which is Geographic Atrophy) does NOT mean that everyone will go from early to intermediate to advanced dry AMD.

Advanced dry AMD/Geographic Atrophy or Wet AMD are NOT inevitable!

What does vision loss mean?

Vision loss means that photoreceptors are dead.

There are cells that ‘take care of’ photoreceptors that are called called RPEs (Retinal Pigment Epithelium). One job of the RPEs is to remove waste material called drusen from the photoreceptors. When this drusen piles up under the RPEs, it blocks the photoreceptors from getting the ‘food’ they need to keep working. When the RPEs fail, vision impairment can occur.

Photoreceptor death and vision loss can occur in the advanced stages of AMD: wet and geographic atrophy/advanced dry.

Photoreceptor death causes vision loss in the other forms of macular degeneration, but the causes are different from those of AMD.

What’s my risk of vision loss if I have early or intermediate AMD?

Early AMD is diagnosed by the presence of medium-sized drusen which are about the width of an average human hair. People with early AMD typically do not have vision loss. For those with early dry AMD, there’s a 10% risk of progressing to wet AMD in 10 years. Not sure of % risk of progressing to advanced dry AMD/geographic atrophy (GA), but it is similar.

People with intermediate AMD typically have large drusen, pigment changes in the retina, or both. Intermediate AMD may cause some vision loss, but most people will not experience any symptoms. Many people will have vision impairment. For intermediate AMD, the risk is a little higher than that of early AMD: 14-15% to wet AMD. Not sure of % risk of progressing to advanced dry AMD/geographic atrophy (GA) but it is similar.

What’s my risk of vision loss if I have advanced dry or wet AMD?

Geographic atrophy is vision loss caused by dead photoreceptors that when looked at by an eye specialist resembles a pattern of islands of damage. Vision loss results in one or more blind spots.

Wet AMD is also called neovascular AMD (“Neovascular” literally means “new vessels.”). 90% of all vision loss is from wet AMD – most of the time it occurs when it is not detected early and not treated with anti-VEGF injections. Abnormal blood vessels grow underneath the retina. These vessels can leak fluid and blood, which may lead to swelling and damage of the macula. The damage may be rapid and severe, unlike the more gradual course of geographic atrophy. It is possible to have both geographic atrophy and neovascular AMD in the same eye, and either condition can appear first.

References

Treatments for dry age-related macular degeneration and Stargardt disease: a systematic review.

What is AMD? from the National Institute of Health (NIH) National Eye Institute (NEI)

Excellent source of information including videos, illustrations & brochures: The Angiogenesis Foundation

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What should I be eating or not eating to hopefully slow the progression of AMD?

Question: what should I be eating or not eating to hopefully slow the progression of AMD?

Answer: Research showed that those who followed a Mediterranean diet had a 41% reduced rate of development and progression to late AMD. You can read about the research by going to ‘Mediterranean Diet and Incidence of Advanced Age-Related Macular Degeneration: The EYE-RISK Consortium.’ 

Does that apply to those who already have AMD?
This is from the AAO (American Academy of Ophthalmology) ‘New Study Confirms Mediterranean Diet Prevents a Leading Cause of Blindness’:
“SAN FRANCISCO – September 30, 2018 – Evidence is mounting that a poor diet plays an important role in the development of age-related macular degeneration (AMD), a leading cause of blindness in the United States. A large collaboration of researchers from the European Union investigating the connection between genes and lifestyle on the development of AMD has found that people who adhered to a Mediterranean diet cut their risk of late-stage AMD by 41 percent. This research expands on previous studies and suggests that such a diet is beneficial for everyone, whether you already have the disease or are at risk of developing it. “
The Mediterranean way of eating has also been shown to be beneficial for our hearts and our brains.
Is eating this way the ONLY thing I need to do to slow my progression?
When we talk about diet, we are not trying to say that it’s the ‘magic wand’ to managing AMD. It’s one factor in a list of other lifestyle factors that are important.
Don’t beat yourself up if your diet hasn’t been healthy or healthy enough – diet alone did NOT cause your AMD! The good news is that it’s never too late to make changes. Just be patient, it takes the body time to adjust. You’ll find more information about the many risk factors for the development and progression of AMD in ‘Did I do something? Will I get it if Dad had it? What can I do to slow it down?
What specifically is the Mediterranean Diet for AMD?
One thing we need to know is what EXACTLY is a Mediterranean diet for managing AMD? Is it the Mediterranean way of eating with lots of olive oil and pasta? Not exactly.
There are 2 basic components: 1) foods to include and 2) foods to avoid. The article ‘Eating for Your Eyes: Mediterranean Diet & Macular Degeneration’ is the best one I’ve found. Not only does it tell us what to include and what to avoid, it tells us how much we should be eating in each category. [This site has disappeared, but luckily I copied it! I am trying to track down the optometrist who created on the site optomeyeslife].
The articles says, “Are you interested in trying the Mediterranean diet? These tips will help you get started.”
  1. Eat more fruits and vegetables. Aim for at least 6 to 7 servings each day (2.5 cups of vegetables and 2 cups of fruit daily).
  2. Opt for whole grains. Aim for 5 to 6 servings each day. Switch to whole-grain bread, cereal and pasta. Whole grains include couscous, bulgur wheat, and brown or wild rice.
  3. Use healthy fats. Use olive oil instead of butter or margarine. Avoid peanut, safflower, corn, and soybean oils.
  4. Spice it up. Use garlic, herbs, and spices to season your meals and boost flavor.
  5. Eat seafood weekly. Aim for one to two servings per week.
  6. Limit red meat and poultry to one serving or less per week. If you eat meat, choose lean cuts and keep portions small.
  7. Eat dairy in moderation. Eat low-fat Greek or plain yogurt and small amounts of a variety of cheeses.

GO BACK TO FREQUENTLY ASKED QUESTIONS

What Are the Stages of AMD?

QUESTION: What are the stages of AMD?

ANSWER:
There are 2 types of AMD (doesn’t apply to other forms of macular degeneration): dry and wet.

For dry AMD, there are 3 stages: early, intermediate, and advanced dry also called geographic atrophy.

Wet AMD and Geographic Atrophy are considered advanced stages of AMD. Most people – 85-90% – have early or intermediate dry AMD. You may hear more about wet AMD because of the current treatment, but it is actually much less common and everyone does NOT progress to either of the advanced stages.

Did you know you can have one eye with wet and one with dry? Are you confused? I hope this article will help: ‘Wet and Dry, One Eye or Both…I Am SO Confused!’

The article ‘Macular Degeneration Stages’ does a good job of explaining each stage, tells what symptoms you might experience, and how each stage is diagnosed.

One of the best resources I’ve found to help us understand AMD is from the site The Science of AMD.

Don’t be intimidated by all the text – where you see the symbol of a speaker in the right corner of a section, choose it, and you will get audio narration. I’ve circled that symbol on the site.

 

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What are drusen? Does it mean I have AMD? Is it drusen or drusens?

QUESTION: What are drusen? Does it mean I have AMD?
 
Short Answer
The word ‘drusen’ is plural. One of them is ‘druse’. 
Two Important Types of Cells
The retina is very complex. The macula is part of the retina. There are 2 types of cells that are central to a discussion of drusen: RPE cells (Retinal Pigment Epithelium) and the photoreceptors that turn light into sight.  The RPE cells are ‘slaves’ to the ‘master’ photoreceptors. They bring the photoreceptors nourishment to keep them alive, and they remove waste materials from them (think ‘eye poop’). If the RPEs are damaged and can’t do their job, the photoreceptors don’t function well. If the RPE cells die, the photoreceptors eventually die, too. That’s when vision loss occurs.
So what exactly are drusen?
AMD is the only type of macular degeneration where drusen occur.
Drusen are a buildup of waste material (think ‘eye poop’) under the RPE cells which are the ‘slaves’ (nourish them & keep them ‘clean’) to the photoreceptors which give us sight.

If that drusen/’eye poop’ is in the macula, it CAN be a sign of AMD (not always, you’ll see that below). The significance is that it can tell the eye professional how far your AMD has progressed and what stage it is. It also weakens the cells below it which can allow the blood vessels that feed the retina to grow beyond their boundaries and become wet AMD.

 
Click on the image to go to the source
In the middle of the illustration, drusen are shown as a yellow ‘clump’ under the RPEs and above the blood supply in what is called the choroid. Between the choroid and the RPEs is Bruch’s membrane. 
You can find a more detailed description and more illustrations on one of the best sites I’ve found: ‘The Science of AMD.’
 
Does having drusen mean that I have AMD?

Not necessarily. It depends first on where the drusen are located. It can be inside the macular and outside it, too. It’s the drusen in the macula that can be of concern.

There are two types of macular drusen: hard and soft.

Hard drusen are small and have defined edges. They are more common as we age. They don’t necessarily mean that you have AMD. Soft drusen are larger and their borders are not defined. They vary in side and shape. Your eye doctor will be able to tell what stage your AMD is by the number and size of the drusen plus some other factors).

You can find out how each stage is diagnosed on the page ‘Macular Drusen.’

What is geographic atrophy?

Question: What is Geographic Atrophy?

Answer: There are stages of AMD: early dry (everyone starts at that stage even if not diagnosed them), intermediate AMD, and advanced AMD which is either advanced dry which is geographic atrophy (GA) and/or wet AMD. A few things to clarify:

  • Although it is rare, a person can have both wet and GA in the same eye.
  • Not everyone progresses to an advanced stage. 85-90% of all people with AMD have the early or intermediate dry form.
  • Although they all have the word ‘dry’ in them, progression is not necessarily from early to intermediate to advanced dry AMD. The progression CAN be from early dry to intermediate dry. Not everyone progresses beyond that.
  • It’s called ‘geographic’ because when the eye doctor looks at the retina, there are often what looks like ‘islands’ of damaged macular cells.

The Science of AMD

One of the best websites I’ve found is called The Science of AMD. 

If you scroll/move down the page, you’ll find a section about Geographic Atrophy. This site gives you the ability to hear the text (convert text to speech) if you select the speaker icon in the upper right of any section.

I recommend that you take the time to explore this site.

Other Resources

‘What is Geographic Atrophy?’

‘Geographic Atrophy’

Living With GA

Living With GA

My friend of 40+ years Sue has had geographic atrophy for over 6 years. That means she has a blind spot in each eye and is legally blind. She has always led an active life and that hasn’t changed any. At 69, she works as a psychologist, attends multiple exercise classes, kayaks, skis, rides her bike, walks her 2 boisterous dogs…you name it, she does it. The only thing that she does not do that she did ‘before’ is drive. That hasn’t stopped her from going places and doing things.

I’ll let her tell you about living with Geographic Atrophy: “I am not a victim. I have had geographic atrophy (dry age-related macular degeneration) for over 6 years but it has not destroyed my life. It has not destroyed me. Nothing is in ruins and I am not suffering.”

Her story continues at ‘Living With Geographic Atrophy.’

She was enrolled in the phase 3 clinical trial for a drug then called APL-2, now called Pegcetacoplan. At the end of that trial, she was enrolled in the long-term study of the drug which will show the safety and effectiveness of it over a 3 year period. You can read about that and also about her plan to find a stem cell clinical trial! ‘My Diabolical Plan: Stem Cell Transplant for Dry AMD.’

You can read about the early days of her journey on our site ‘My Macular Degeneration Journey/Journal.’ In 2019, she started to write for the site maculardegeneration.net where you can read her articles.

GO BACK TO FREQUENTLY ASKED QUESTIONS

I have dry AMD. Will It Turn to Wet? What is wet AMD?

QUESTION: I have dry AMD. Will it turn to wet?

ANSWER:

Not everyone with AMD progresses to wet AMD. There is another FAQ with details about the risk of vision loss from AMD. Briefly, if you have early or intermediate dry AMD, your risk of progressing to wet is 10-14 or 15 %. That means that 85-90% of all people with AMD have the dry kind, so that’s the majority. Wet AMD is in the minority and rare, but if left untreated it can quickly cause central vision loss.

Parts of the Retina

The parts of a healthy retina.
Click on image to see it larger.

Let’s review the parts of the retina that are involved in AMD. From top to bottom there are the Photoreceptors (rods & cones) that convert light to sight, RPEs that take care of the Photoreceptors, Bruch’s Membrane, and the blood supply in the Choroid.

How and Why The Process Starts

VEGF (Vascular Endothelial Growth Factor) is a protein produced from cells that causes new blood vessels to develop when needed, such as after an injury or lack of oxygen. In most places in the body, that’s a good thing. But not when it happens in the retina.

Photoreceptors, RPEs and Angiogenesis

All AMD starts as dry even if it’s not diagnosed until it’s wet. As the disease progresses, drusen (we call it ‘eye poop’) builds up and can weaken Bruch’s Membrane. This causes inflammation which signals the release of VEGF. This process is called angiogenesis (‘angio’ refers to blood, ‘genesis’ refers to development of something).

These unwanted blood vessels grow through the weakened Bruch’s Membrane into the area of Photoreceptors and the RPEs.

Wet AMD and CNV

This process is called wet AMD and CNV (Choroidal Neo-vascularization refers to the Choroid, ‘neo’ refers to new, and vascularization refers to blood vessels).

Wet AMD is Exudative Macular Degeneration

Those new blood vessels are fragile and can leak fluid, can rupture and leak blood, or both. That’s where the ‘wet’ descriptor came from. These fluids are ‘edudates’ which is why sometimes you’ll see wet AMD referred to as Exudative AMD and dry as Nonexudative AMD.  CNV can occur in any form of macular degeneration.

Symptoms from Wet AMD/CNV

For normal vision, the macula needs to be flat. The blood or fluid collects in something similar to a blister which distorts vision and causes a person to see wavy lines and have other distortions. Have you ever had a drop of water fall on a piece of paper with writing? It distorts what is under it, right?

Make sure if you have any changes in your vision that you contact your eye doctor as soon as possible. Research has shown that the sooner treatment is started, the better the prognosis.

Inflammation

This buildup of fluid or blood causes inflammation (edema) and can form scar tissue which cannot be removed. It can also cause damage to the RPEs, so they’re not able to keep the Photoreceptors working well. It can also kill the RPEs. If the RPE dies, the Photoreceptor dies, and central vision loss occurs. That’s why it is so important to get treatment as soon as possible!

The Injections

The medications that are injected into the eye are called anti-VEGF because they block the further release of VEGF. They are also called angiogenesis medications. That stops new blood vessels from growing. You might think of a VEGF protein as a lock. The anti-VEGF medication puts the key in the VEGF lock to stop it.

Current Anti-VEGF Medications

The current anti-VEGF medications are Lucentis, Eylea, Avastin, and Beovu. For some people, the disease is slowed down by repeated treatments. For some, vision improves. Everyone is different.

‘Dried Up’ is not Dry AMD

The blood and/or fluid is then reabsorbed by the body. That’s why you’ll hear the retinal specialist say that the eye is ‘dried up.’ That’s not the same as dry AMD. Wet AMD cannot go backwards, but sometimes it goes into something similar to remission and can remain stable. You always have to be diligent to check your vision and report any changes.

The anti-VEGF medications wear off quickly, so repeated injections are necessary.

New and Better Treatments on the Horizon

There is a lot of research related to wet AMD/CNV. New treatments will extend the time between them and replace injections with eye drops and oral medications. It’s the drops and pills that many people are looking forward to! You can find out more in the article ‘Have Wet AMD and Hoping for Something Other Than Injections?’

Even better, with gene therapy, a ‘one-and-done’ treatment may stop the disease entirely. There’s more about this in ‘Gene Therapy Research for AMD.’

Great Resource

One of the best sources of information about AMD is from the Angiogenesis Foundation’s site ‘Science of AMD.’  There you can find text explanations with audio available, colorful illustrations, videos, and brochures.  They are a not-for-profit site, so they don’t sell anything. That’s a good indication that their information is not biased.

There is an excellent infographic explaining the angiogenesis of AMD.

GO BACK TO FREQUENTLY ASKED QUESTIONS

 

Can’t find answers to other questions?

If you don’t find the answers to all your questions, here’s a great article that answers these questions: (there are lots of them, so look at the whole post).

-Does macular degeneration only affect older people?
– Can you get macular degeneration in both eyes?
– I love reading. Will I make my macular degeneration worse by continuing to read?
– Can ‘using’ my eyes cause further damage, will resting them ‘make them last longer’?
– Can ‘resting’ my good eye save it from developing macular degeneration?
— I have dry eyes. Is this the same as dry macular degeneration?
– I have watery eyes. Does this mean I have wet macular degeneration?
– Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?
– Is macular degeneration painful?
– Why don’t new spectacles help?
– Does any other eye disease such as cataract, glaucoma or diabetic retinopathy have an impact on macular degeneration?
– Is a macular hole the same as macular degeneration?
– Is it ‘normal’ to experience visual hallucinations?
– My vision is good but my doctor says I have the early signs of macular degeneration – what does that mean?
– I have been diagnosed with drusen, does this mean I have macular degeneration?
– Is macular degeneration contagious?
– I have had dry macular degeneration for years. Does this mean I’m going to get wet macular degeneration too?
– Is macular degeneration genetic?
– I have geographic atrophy, what does this mean?
– What is an Amsler grid?
– I have noticed changes to my vision when using the Amsler grid, what should I do?
– Is exercise good for macular degeneration?
– Are supplements shown to be preventative?
– I have vision loss from macular degeneration and cataracts. Will cataract surgery be of any use?
– Does cataract surgery increase the risk of macular disease progression?

 

GO BACK TO FREQUENTLY ASKED QUESTIONS

Can I travel by air with macular degeneration?

QUESTION: Can I travel by air with macular degeneration?

ANSWER: There ARE some eye conditions where air flight isn’t recommended. Here’s a great article with a lot of them: ‘Can I Fly With This Eye?’ 

Macular degeneration is not included, but if you have ANY questions, don’t hesitate to ask your eye doctor. If you are being treated for wet AMD/CNV, ask your retinal specialist if you should wait a few days after a treatment before a flight.

GO BACK TO FREQUENTLY ASKED QUESTIONS

 

When will we have an alternative to injections for wet AMD?

QUESTION: when will we have an alternative to injections for wet AMD? (updated 1/25/2021)
ANSWER: For those with wet AMD/CNV, having injections can be an issue, especially the thought of the first one! I get this question often: when will there be eye drops instead?
 
Eye drops are being tested in the lab (called preclinical trials) on rats and also on larger animals. They have to do that before they do research on humans (called clinical trials). Then the clinical trials have to go through phases before they’re available to eye professionals. Bottom line: I haven’t seen any estimate of when that would be. Sorry.
Researchers are closer to being able to put more time between injections. One technique is to put a teeny, tiny implant in the eye that they fill and refill with anti-VEGF medication. It’s called the Port Deliver System (PDS).
Finally, here’s an article I wrote ‘Have Wet AMD and Hoping for Something Other Than Injections?’
The good news is that it’s hard to keep up with all the research! We’re doing our best to keep you updated. 

Why are there injections for wet AMD? What do they do and how?

QUESTIONS: Why are there injections for wet AMD? What do they do and how?

ANSWER: Here’s a good video explaining what happens with wet AMD, what’s the medication in the injections, and how do doctors give them. They talk about Lucentis but there are 3 anti-VEGF medicines: Lucentis, Eylea, and Avastin. They all work basically the same and are given in the same way.
https://youtu.be/4Y1eRNv5c3A

What are all known risk factors for AMD? Why did this happen to me?

QUESTION: What are the risk factors of AMD? Why did this happen to me?

This post applies only to AMD. Other forms of macular degeneration have different causes and different risk factors.

Risk Factors

The answer is about risk factors for AMD. Quick answers:

1. There’s no way of knowing why this happened to you, so don’t blame yourself. You didn’t know about the disease, so you didn’t knowingly bring it on yourself.
2. Heredity IS a factor but not the cause, so that if you have a first-degree relative with it (parents, siblings, children), you have a higher risk of developing AMD than someone who does not, but that doesn’t mean you will absolutely develop AMD. We have members who have no family history but have AMD. We have members with a family history who never develop it. As a matter of fact, only 10-15% of those with AMD have a first-degree relative with it. For more about genetics & AMD, go to the Genetic Home Reference.
3. If you have certain risk factors, you can work on them. Look at the ones under ‘what you can control’ below.

DETAILS

We talk frequently about risk factors vs causes of AMD. A risk factor is something that has been associated with a disease. A cause is a biological condition that if you have it, you have the disease. We do not know what causes AMD in any individual which is why we often call AMD ‘idiopathic’ which means “relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.”

One reason to do this exercise is to understand what can and what can’t be changed. I can’t help but think of the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”

What You Cannot Change

A. Age >50; risk goes up as age goes up

B. First degree relative: mother or father, siblings, children with AMD

C. Gene variations on ARM2 and CFH and other specific genes (some related to inflammation); don’t know if not tested

D. Race: Caucasian heritage

E. AMD in one eye (other eye is at higher risk)

F. Female

G. Blue eyes

H. Early menopause as determined by medical diagnosis

I. Light skin

What You Can Work On Changing

J. Smoking, former smoking or exposed to second-hand smoke (less than current smokers)

K. BMI/obesity

L. Uncontrolled high blood pressure (hypertension)

M. Sedentary lifestyle

N. Uncontrolled high total cholesterol

O. Poor nutrition including high fat (especially artificial fats & saturated fats) and sugar intake; low plant-based foods intake

P. Sun exposure: Past (can’t change) and current (can change) sun exposure; maybe blue light exposure (conflicting opinions; no firm evidence); includes living in locations with higher amount of exposure to sunlight

Q. Drug side effects: Aralen/chloroquine, Thorazine/chlorpromazine, Mellaril/thioridazine, Prolixin/fluphenazine, Trilafon/perphenazine, Stelazine/trifluoperazine)

R. Poor dental hygiene

S. Exposure to past (can’t change) or current (can change somewhat) environmental toxins

T. Excessive alcohol use

U. Vitamin and mineral deficiencies or excesses as found through medical testing

V. Type 2 diabetes is associated with a higher risk of AMD. Add this letter after some of you have already responded.

There may be more!

GO BACK TO FREQUENTLY ASKED QUESTIONS

Are there types of macular degeneration other than AMD?

QUESTION: Are there types of macular degeneration other than AMD?

Yes, there are. They vary mostly in their cause, but can also vary in age of onset.

Most of our Facebook group members have AMD which is Age-Related Macular Degeneration (or ARMD or age-related maculopathy). I try to be precise and use AMD when the information is specific to this type.

Specific to AMD

Myopic Macular Degeneration (MMD)

Myopia is also called nearsightedness or shortsightedness. With myopia, close objects look clear, but distant objects appear blurred. Myopia is a common condition that affects an estimated 25% of Americans. It is not a type of macular degeneration or other eye disease. It’s a problem with focusing because the eyeball changes shape from the normal baseball-like one to a football-like one. The focusing problem comes from the distance from the cornea to the retina is too long.

Most myopia can be corrected with refraction, ie, specific prescriptions for eyeglasses. However, if the myopia progresses to high myopia (also called pathological myopia), the retina becomes thin leading to areas of atrophy & possible vision loss. If this thinning and atrophy occurs it the macula, it’s called Myopic Macular Degeneration or MMD.

The terms dry and wet are sometimes used.

There’s more about MMD in the FAQ ‘What is Myopic Macular Degeneration?’

 

 

 

Diabetic Macular Edema (DME)

Juvenile forms of macular degeneration are usually genetic and develop at a young age but the symptoms may not appear till a person is older:
Stargardt’s Disease which is a juvenile, inherited form
Best’s disease, also called Best’s vitelliform macular dystrophy
Macular Dystrophy – most often used to refer to a juvenile form of MD
Cone-Rod Dystrophy
Sorsby’s Macular Dystrophy

Macular telangiectasia abbreviated MacTel, sometimes referred to as idiopathic juxtafoveal macular telangiectasia. There’s Type 1 and Type 2.

What these types of macular degeneration have in common:
CNV (Choroidal NeoVascularizatin). That’s the growth of blood vessels into the macula which leak and can cause visoin loss. The treatment is with anti-VEGF injections. With CNV, this is called wet AMD. Sometimes you will see ‘wet’ MMD.

affect central vision

NOT macular degeneration:
diseases of the cornea: Fuch’s Dystrophy, Corneal Dystrophy
Macular hole, macular pucker, retinal detachment
juvenile retinoschisis
eye stroke
lattice degeneration (affects peripheral vision)
retinitis pigmentosa (RP)

floaters

References:
Stargardt’s Disease and Best’s Disease–>www.brightfocus.org/macular/article/juvenile-macular
Juvenile MD–>http://lowvision.preventblindness.org/…/types-of…
Juvenile MD–>https://www.aao.org/…/dis…/juvenile-macular-degeneration

Are there other retinal and macular disorders I might have?

QUESTION: Are there other retinal and macular disorders I might have?

AMD is a form of macular degeneration that occurs in people 50 and older. There are other changes that occur as we age, so it’s not uncommon for people with AMD to have other age-related disorders.

Changes in the Vitreous As We Age

The vitreous is the jelly-like fluid (99% water) that fills the eye between the lens in the front of the eye and the retina in the back of the eye. It is firmly attached to the inside. The shape of the eye is maintained by long collagen fibers connected to the front and to the back. Problems occur when the vitreous changes due to the natural aging process or from an eye disease. As we age, it becomes more fluid and tugs where it is connected including at the retina. In most people, the vitreous eventually detaches completely from the retina in a process called a Posterior Vitreous Detachment (PVD). PVDs  sometimes occur after cataract surgery. People with myopia (nearsightedness or shortsightedness) are prone to PVDs. Watch this short video for a simple explanation of this process.

Another consequence of the aging process is that the collagen fibers start to ‘clump’ and cast shadows on the retina that we see as floaters. When a PVD occurs, we may see an increase in floaters and also flashing lights in our peripheral vision. The collagen fibers that cause the floaters tend to sink to the bottom of the vitreous with time.

How long do these symptoms last? In this video ‘How long do symptoms of posterior vitreous detachment last?’, we find out that a PVD may occur over time (several weeks or even several months) with symptoms such as an increase in floaters and flashes of light. The flashes of light are caused by the tugging at the retina which causes a ‘mechanical’ light – the same reaction as when light hits it.

As long as there is no retinal detachment, there is no reason for concern. It is recommended, however, that you see your eye doctor when this occurs to make sure that there isn’t anything that may signal a more serious problem. The symptoms of a full retinal detachment, which requires immediate attention, are below.

Possible Consequences of Vitreous Traction

If the vitreous does not completely detach, it can tug at the retina. That’s called Vitreous Traction (VT). That tugging can create flashing lights.

The vitreous is attached to the macula. When it tugs on it, it is called Vitreomacular Traction (VMT). This can cause damage, sometimes vision loss, if not treated quickly. The consequences of VMT can be macular hole, epiretinal membrane/macular pucker/macular wrinkle, and retinal detachment.

The Vitreous Video Series

This video series goes through the entire process of possible changes in the vitreous and the consequences of some of them. These are short videos. The longest is 10 minutes:

Retinal Detachment – Emergency!!

One serious possible consequence of the vitreous tugging at the retina is a retinal detachment which can occur gradually or suddenly. In either case, call your eye doctor as soon as possible. What are the symptoms? The most common one is having part of the visual field blocked with what might be called a curtain that can come down from the top or up from the bottom. You might also see something that looks like a ‘sticker’ blocking your vision.

This video is a good one to describe what goes on with a retinal detachment:
‘Retinal Detachment Symptoms and Treatment | How Retinal Detachment is Treated’ 

GO BACK TO FREQUENTLY ASKED QUESTIONS

 

 

 

 

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

Can staring at a computer or other electronic device make my AMD worse?

QUESTION: Can staring at a computer or other electronic device make my AMD worse?

You can find articles about the dangers of blue light from our electronics, but there’s no evidence that it makes AMD worse.

Many people say they have problems with vision after being in front of an electronic device for hours but those symptoms are usually from digital eye strain/computer eye strain or dry eye syndrome. Some symptoms are:


– Sore, tired, burning or itching eyes
– Watery or dry eyes
– Blurred or double vision
– Headache
– Sore neck, shoulders or back
– Increased sensitivity to light
– Difficulty concentrating
– Feeling that you cannot keep your eyes open

There’s the 20-20-20 Rule: Every 20 minutes, look up and focus 20 feet away for 20 seconds.

What can you do about it? Here’s an article “Computer Eye Strain: 10 Steps For Relief”–>https://www.allaboutvision.com/cvs/irritated.htm

Another article about Computer Vision Syndrome–>https://www.webmd.com/eye-health/computer-vision-syndrome

go to frequently asked questions

What questions do I need to have answered by my eye specialist?

Question: What questions do I need to have answered by my eye specialist?

Hopefully as you have been learning more about your diagnosis, you’ve been writing down any questions you have. Make sure you take that list with you to your next appointment.

  1. You need to have a firm diagnosis. Age-related Macular Degeneration (AMD) is not the only type of macular degeneration. It is most common in those 50 and older. For someone under that age, there is Myopic Macular Degeneration (MMD; any age) and forms of Juvenile MD.

2. If it is AMD, you need to know what stage each eye is in. You can have dry or wet in both eyes, dry in one eye and wet in the other, or AMD in only one eye. With that information you can make informed decisions about what might help you, what treatment(s) is available, etc.

Here is a complete list of questions. https://www.macular.org/ten-questions-ask-your-doctor

go back to frequently asked questions

I’m stressed, anxious, depressed. How do I deal with this?

First, what you’re feeling is ‘normal’ for those who get a diagnosis of any vision-threatening disease. Some of you have been told by your eye specialist, “There’s nothing I can do for you.” That certainly can contribute to the stress of getting the diagnosis!

Research shows that stress may be a contributing factor to the progression of AMD. Even though more research is necessary, we need to be able to manage our emotional health to make better decisions and to be open to learning new and better ways to cope with the disease.

Who is Sue and Why Should I Read What She Writes?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 69 and with advanced dry AMD/geographic atrophy, she works as a psychologist, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and new friends she’s been making along the way!

My Recommendations

‘Advice to the Newly Diagnosed’

Since she’s written over 600 pages, I’ve collected some of them:

Sue’s other pages for the newly diagnosed and highly-rated pages

Dealing with the Emotional Reaction to Vision Loss

Stress and AMD

The article ‘Assessing the Impact of Stress on Age-Related Eye Disease’ says, “Article says, “Dougherty and colleagues also note that stress may be associated with increased inflammation and that AMD is an inflammatory disease — raising the possibility that stress may contribute to disease progression. Future research using repeated assessments with the PSS and measurement of inflammatory markers might help determine how perceived stress levels affect the risk of AMD progression and deteriorating vision”

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