Highlight: Do our choices or our genes impact the development & progression of AMD?

You may have gotten an email yesterday about this post which said it was password protected.  I keep forgetting that putting a password on a page while it’s being developed doesn’t work to stop an early email.  Sorry!

Facebook group member Vickie Hoecherl (a link to her new Guest Author page below) has gone through the December 2017 article from the award-winning lecture by well-respected and widely-published Dr. Johanna M. Seddon and has shared with the group members some of the researcher’s quotes.   Click here for the full article “Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture”.


Do our choices impact the progression of AMD?  How much of our future is written in our genetic code

Note: If you see (), we’ve left out statistics from Dr. Seddon’s article. You can see them in the full article. Also, we’ve added topic headings to the researcher’s quotes. 
Nature vs. nurture

“Our analyses showed that a high proportion of AMD was attributable to genetics, with heritability ranging from 46% to 71%, depending on the stage of the disease. More advanced disease, as well as larger drusen and greater drusen area measuring 175 μm or larger were highly heritable, with estimates of 71%. The environmental influence on this disease is also notable (19% to 37%). Therefore, both nature and nurture were important in the development of AMD.”

Stop smoking

“The leading modifiable risk factor is cigarette smoking.”

Eat your greens, know your fats

“. . . . a higher frequency of intake of spinach or collard greens was associated with a substantially lower risk for AMD. Results suggested an 88% lower risk with higher intake, defined as eating a one-half cup serving at least five times per week. Other foods that are high in lutein and zeaxanthin include dark green leafy vegetables, kale, turnip greens, and collard greens.”

“High total fat intake was associated with almost a three-fold higher risk of progression and saturated and trans-unsaturated fats conferred over a 2-fold higher rate of progression from nonadvanced to advanced stages of AMD. Higher intake of omega-3 fats, which are found in high levels in fish and some nuts, reduced risk of progression to advanced AMD by 25% to 40%, particularly among participants with lower linoleic acid intake.”

Supplements weigh in

“Supplements containing vitamin C, E, zinc, as well as lutein and zeaxanthin are now recommended for individuals with intermediate-level AMD”

Get out the tape measure

“We also evaluated modifiable anthropometric factors, including BMI, waist circumference, and waist-to-hip ratio, in our prospective cohort. A BMI defined as obese (≥30) was significantly associated with a higher risk of progression to advanced stages of AMD (), as was the overweight classification (). A significant trend was observed for higher risk with higher BMI (). The highest tertile of waist circumference significantly increased risk of progression () compared with the lowest tertile. A higher waist-to-hip ratio also increased risk of progression (). In contrast, higher levels of physical activity tended to reduce risk of progression. ”

Genes effect on occurrence and progression

“Genes conferring AMD risk are not only related to the occurrence of AMD as found in case-control studies, but we also found they are important in determining the rate of progression of disease over time, from early and intermediate stages to advanced clinical phenotypes.”

Genes and diet can interplay

“We found the highest quintile of omega-3 intake was associated with a lower risk of progression to geographic atrophy, when compared with the lowest intake, and this beneficial effect was noted particularly among individuals who carried the homozygous risk genotype for ARMS2 (). No protective effect was observed for the ARMS2 homozygous nonrisk genotype. ”

“Additional gene-diet differences were observed with regard to high adherence to a Mediterranean diet (). High adherence reduced the risk of progression to advanced AMD, and specifically among those individuals carrying at least one nonrisk allele at CFH Y402H (). There was no effect of the Mediterranean diet on risk of progressing to advanced AMD among individuals carrying the CFH homozygous risk genotype (CC).”

“In our diet-gene evaluation of dietary folate, high consumption of dietary folate was significantly associated with a lower risk of progression (). We found a protective effect of higher folate intake against progression to geographic atrophy, particularly among individuals carrying the C3 R102G homozygous nonrisk genotype (). The beneficial effect of folate was not observed for those carrying at least one risk allele (G) at this locus.”

“We also recently reported that participants with the highest quintile of dietary vitamin D intake had a significantly lower risk of progression to advanced stages of AMD, and especially NV. This effect also may vary according to genotype.”


Read about Vickie’s journey with AMD

 

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That Preachy Zealot

Here she is again, that preachy zealot for clean living! How are you all doing?

I was looking for new info on AMD and I found this article.

I know I harp on this topic ad nauseam but seeing this in the new releases I could not help myself. I am basically weak (and can be profoundly irritating?).

Anyway, a recent article on nature.com presented research suggesting AMD does not like clean-living folks. People working on the Blue Mountain Eye Study evaluated a group in the late 1990s and then again 15 years later. They looked at physical activity, diet, smoking and alcohol consumption as it relates to AMD. After all was said and done, the researchers decided it would be helpful if people could be encouraged to engage in good health habits.

They quoted data that women who eat well, are physically active and don’t smoke are three times less likely to develop AMD than women who do not have a healthy lifestyle. If you add the complement factor H at risk allele into the mix, the poor souls who eat crap, don’t exercise and smoke really don’t have much of a chance of dodging the disease at all.

What I just quoted was an older study, CAREDS. It used only women. The Blue Mountain people decided to replicate it but to include both genders. They also added alcohol consumption as a variable.

Blue Mountain concluded the combined effects of the four, healthy living variables were better than only one of the habits alone. They hypothesized each of the healthy habits helps to reduce oxidative stress and therefore reduce inflammation, generally thought to be a huge factor in the development of AMD.  [Lin/Linda: Sue talks explains what oxidative stress in her page Electron Rustlers.]

In addition, good health habits can affect the density of macular pigment. Thicker macular pigment can be protective. And BTW, levels of macular pigment can be negatively affected by obesity.

Since I always like to support our friends Down Under, I am making a pitch for healthy living just like the Blue Mountain people. Avoiding bad habits and developing good ones can decrease your chances of developing AMD. It can also reduce the rate of progression of the disease.

Hard to change habits? Absolutely. I am a carbs and salt girl. Horrible for me, but that is what I crave. I have never been a fruit eater.

However, since getting my diagnosis I am drinking a cup of fruit juice every morning. Enough of a change? I doubt it but at least I feel as if I am making the effort.

How long does it take to establish a habit? Google says 66 days. If you can change one thing in your lifestyle and stick with it for 66 days, you have dealt a blow against AMD. Lifestyle changes are one way we can take some of our power back from this disease. Worth a try. Continue reading “That Preachy Zealot”

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Stop Smoking Now!

This might be turning into the bad habit series for these pages. After doing the page on high BMIs and increase AMD risk, I looked up ‘hot topics + AMD’ and found smoking listed as numero uno. OK. Smoking it is.

I don’t smoke. Never did. It smells and is ridiculously expensive. Worse yet, it is bad for your health. And when I say health, I am including eye health.

BrightFocus Foundation in Smoking and Age-Related Macular Degeneration says smoking brings oxidants into the body. Chemicals can also damage cells. This activates the immune system which can further damage your eyes. These are ways cigarette smoke can increase your risk of AMD. I am sure you have heard cigarette smoking is the largest, modifiable risk factor for AMD. Those are the reasons why it is such a risk.

At least 4 of the Marlboro men died of lung cancer

The problem is it is hard to quit smoking! You have been doing it for years. Many of you remember the coolest commercials on TV were cigarette ads. Remember the Marlboro man? How about Joe Camel? And ladies, how can we forget those long, sleek, sophisticated women who sold us Virginia Slims. Could Joe Camel have steered us wrong all those years ago? Let’s just say Madison Avenue certainly did a number on us!

Anyway, no one ever showed us the Marlboro man using a white cane and hacking a lung out, so we believed the ads. Lots of us smoked and became addicted.

If you have AMD or live with someone who has AMD, you have been told to stop smoking. Quit.com has a whole list of suggestions on how to do this. They are reasonably good. For example, one of them even goes back to one of my favorite psychological theorists, Viktor Frankl, when it says know your reasons for quitting. Remember Frankl said if we have a why, we can endure any how? (“Those who have a ‘why’ to live, can bear with almost any ‘how’.”) Great philosophy turns up in the damnedest places.

I would add a few more from my DBT distress tolerance toolbox. Stop being sorry for yourself. Be mindful and practice gratitude. Be willing, not willful.

You are totally right. Life is not fair and now they really are trying to take away your one bad habit. It is for your own good. Stop dwelling on what “they” are taking away and think about all you have. Get involved. Substitute some fun activities for smoking, or better yet, do for someone else. Turn your mind. Continue reading “Stop Smoking Now!”

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News: Smoking Makes Your Vision Poor Shows Research

April 11, 2016

Article from India:

With a surge in eye-related diseases in India, Ophthalmologist have said smoking is emerging as one of the major reasons behind vision-loss among patients. However, only 10-20 percent people are aware of it.

According to the doctors, several studies have shown that smoking increases the risk of age-related macular degeneration, cataract, glaucoma, diabetic retinopathy and dry eye syndrome.

Click here to read the entire article.

 

 

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Resources

Please read the disclaimer.  I will also admit that I have not read every word of every reference.  I’m just trying to provide resources to help you do your own research in addition to what we have found. – Linda…

updated November 25th, 2017

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 to take several quizzes to test your knowledge of the disease
  • 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.
  • Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)

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

listed in no particular order

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Websites containing information about AMD

listed in no particular order

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Support

Message Boards including ones from
By postal mail
  • 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

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Books and reading materials

Specific Titles

Sources of Books

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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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Possible causes/contributing 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

Genetics

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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