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

Category: Treatment

Sue – ‘Super Lab Rat’ – Fulfills a Pledge. March 2023

Hi, it’s Sue! Back in 2018 or so, I was celebrating getting into a clinical trial. I vowed I would do whatever I could to become the best, damn “lab rat” that Wills Eye Hospital had ever seen. I was going to be a super lab rat with all sorts of great accomplishments to my credit. [Lin/Linda here: it was actually June 2019 when she wrote about being accepted into the APL-2 clinical trial: Finally a Lab Rat. Considering how active her life is, I’m not at all surprised she can’t keep the dates straight! ::grin::]

Spokes Rat

Well, I don’t know if I have actually been good enough to be considered a super lab rat but today I fulfilled one of my pledges. Today I became a ‘spokes rat’ for the medication they have been shooting into my eye, Syfovre. Yes! If your mind can conceive it, you can achieve it. Positive thinking, folks, positive thinking. [At the end, I’ve listed the pages she’s written about her experience in this clinical trial.]

My friend took me to Wills Eye Hospital in Philadelphia today for my very first – and possibly last! – television interview! How do you like that for a kick in the pants? I was interviewed by the local CBS affiliate and I suspect the anchor person and the cameraman were really sorry they had caught this assignment. I talked their ears off…for about 45 minutes… or more. [It will be uploaded to YouTube. When it is, of course I’ll share it.]

I was anxious; yes. By the time they pare my 45 minute ramble to about 45 second, I will not have much exposure but it was still my FIRST TV APPEARANCE. There are over 1.5 million people in Philly. What if somebody sees me? Gulp.

But more important is this: I wanted to get out the right message. I did not want to talk about what it was like to lose my sight. That was over 7 years ago. People who look to the past with sadness and regret get depressed. I have no time for such things. I wanted to talk about now and the future. I wanted to talk about hope.

When I thanked Dr. Garg for recommending me for this assignment he said he wanted someone with energy and enthusiasm. How can I NOT be enthusiastic? In seven years i have gone from the hopelessness of being told there is no treatment and no cure to the approval of the first treatment for geographic atrophy. And I helped. Sort of.

Syfovre can buy us time. Time to ultimately find the cure for dry age-related degeneration, a disease that some say is of epidemic proportion. Lot of people losing their sight out there but at least they now have hope.

Of course, there are still some hurdles to jump over. One does not manufacture millions of doses of a new drug overnight. Apellis is gearing up even as I type. Also, this is not an inexpensive proposition. It was mentioned that the research staff is thinking about injecting both eyes of us ‘lab rats,’ but they are not sure how to cover the cost. How much will Medicare and other insurance companies cover? These are questions for which the answers are still being formulated.

And future treatments? I am still lobbying hard for stem cells but today I heard gene therapy is looking very promising.

The word is promising. It is related to hope. It is related to a brighter future, if your mind can conceive it, you can achieve it. If I can give a TV interview, just about anything can happen!

Sue’s Series on Syfovre

Lin/Linda: Her first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind: February 2016. You can read about that here: In the Beginning.

It was June 2019 she was Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

In August 2022, before the FDA approved Syfovre and after she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger.

After the drug was approved, she revised her article from her perspective of being halfway through the 3-year follow-up study:  My Diabolical Plan Revisited March 2023.

She’s also written What Does Syfovre Mean for You?

Who is Sue, and Why Should You Get to Know Her?

Since there’s not a simple answer to that, I recommend that you choose this where I’ve provided an answer.

 

 

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue

Sue has been in the Syfovre research for about 5 years: here’s the timing:

  • 7 years ago, my long-time friend Sue became legally blind from GA.
  • In 2019, she was accepted into the phase 3 clinical trial for what was then called APL-2 from Apellis Pharmaceuticals. It lasted 24 months/2 years.
  • 1-1/2 years ago, she was accepted into the long-term follow-up study that was then mostly called pegcetacoplan. It’s a 36 month3 year study so she’s halfway through it.

If there’s a gap in time, it’s because the trial was shut down for a time because of COVID.

On February 17th, that treatment was approved by the FDA and is not called Syfovre.

She’s written several articles about this, and this is a new one.
Next week she is going to Philadelphia to appear on an ABC-affiliate TV show with one of the researchers from Wills Eye Hospital which is where she was enrolled in the studies. She’s not sure how widely it will be distributed. I’ll keep you posted.

This is her latest article which includes this statement:

“This drug means hope. This drug means no retinal specialist ever again has to tell a patient there is no treatment, no cure [she’s talking about stem cell research here; read her other article in the comments] and they should go home and go quietly blind. No GA patient will need to leave his retina special appointment feeling hopeless. This drug shines a glimmer at the end of the tunnel. We just may get out of this yet.”

What Does Syfovre Mean for You?’ https://maculardegeneration.net/living/thoughts-on-syfovre

Questions and Answers From Her

1. Does she know whether she got the placebo or the treatment in the phase 3 trial?

No. Why not? She’s in the long-term follow-up so she’s still in what’s considered a research study. They don’t reveal the results to individuals till all the date is gathered.

She HAS been getting the treatment (now called Syfovre) every month for almost 1-1/2 year in the long-term follow-up study. In the phase 3 trial, they used her ‘bad’ eye and continue to treat it only. It’s common to do that in research so as not to jeopardize a ‘good’ eye, relatively speaking. While she’s in still in the research, there’s no option to treat the other eye.

2. Can she tell any difference?

The treatment was not shown to improve vision in the clinical trials. She’s had no improvement in visual acuity. She says her visual acuity in both eyes has stayed pretty much the same during these 5 years, but keep in mind that tests of visual acuity are not entirely objective. She admits that they allow her to use her ‘sweet spot’/best area of vision which may have varied over the years. She says she has seen some ‘real world’ decline, but that’s hard to objectify and not uncommon in geographic atrophy. Her visual acuity in her bad eye over the years has ranged between 20-160 to 200; good eye 20-60 to 80. Bottom line is that she is legally blind.

3. If the purpose is to slow down the progression, has it slowed hers?

She doesn’t know…yet. Hopefully at the end of the long-term study (1-12/ more years), they’ll give her the data they gathered from her trial.

4. Does she have any side effects from the injections?

She has them. They’re similar to those of wet AMD because it’s the same concept: ‘intravitreal injection’ means injection into (inter) the vitreous fluid. The injections don’t hurt, she’s not had any bruising/bloody eye, but she does regularly get floaters & air bubbles that resolve in a few hours. She had some episodes where her eye pressure increases, and she only has light perception – lasts only seconds.

Any Other Questions For Her?

I can pass them along. She even said she’d do a Zoom session if there was enough interest.

Her Diabolical Plan

She has a long-range plan. I’ll let her tell you about it. It includes being included in a stem cell trial in the future which would replace damaged RPEs.

If you don’t know the full story of Sue’s journey, I highly recommend that you read it – it’s in the article at the end. Briefly, in July she’ll be 70. She stills work and is extremely active. When I redid her bio as I[‘ve done many times, I came up with this line which might sum it up:

“What she does NOT do is let her geographic atrophy stop her from doing what she wants to do. As she said herself she is persistent and determined.”

You can read or listen to her story here. It’s a 7 minute listen–>
https://mymacularjournal.com/my-diabolical-plan-revisited-march-2023

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

 

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

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

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 2

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 2 – Those with early dry AMD

Dr. Narayan says, “In AREDS, only 1.3% of participants with early AMD as shown in figure 2 progressed to late AMD within five years. The AREDS demonstrated that there was no statistically significant evidence of a benefit in delaying the progression of eyes with early AMD to more significant drusen-related pathology (intermediate AMD) through the use of antioxidant vitamin and/or zinc supplementation. ”

“This review highlights the multifactorial influences of diet and food intake on the incidence and progression of AMD. As diet is a modifiable risk factor for AMD, improvement to diet and food intake. coupled maintenance of a healthy body mass index, healthy diet, physical activity and stress management should be encouraged.”

Approach for this group:

“There is the challenge for patients in this group to obtain the nutrients they need from their daily life. If they smoke or acknowledge a poor diet and lifestyle, then taking a supplement may be beneficial in a general way.

In summation:

  • The progression from early to advanced AMD within five years occurs in just over 1% of patients.
  • Specific studies on how the risk of progression in mild AMD is influenced by diet and lifestyle are few, but several population studies show benefit for overall risk.
  • Taking the pragmatic approach, all that we would say to someone to keep their eyes healthy can be applied here – smoking cessation, advice on sun protection.
  • Adopt a healthy lifestyle: a healthy body mass index, healthy diet, physical activity and stress management.
  • The highlights of the population studies are summarised in table 3 below.
  • College of Optometrists Leaflet ‘Healthy lifestyle, healthy eyes’.
  • There is no evidence to support the use of high dose antioxidant vitamin and mineral supplements for patients who have less than intermediate AMD.
Table 3: Recommendations on dietary intake

Next: Layer 3 – Patients with a family history

What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10

References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

Where’s Your Hope?

Hello, there! I have been trying to get some things done today….I gave up as of about 30 seconds ago. Nothing is happening.

Wait…that’s a lie. Our Facebook group just hit 1,700 members! Congratulations to Lin and everyone who has worked to make that group a success. [Lin/Linda here: as of my typing, there are at 1,738.  The 38 were added this past week!]

And while congratulations are going out, we should also send one to my former retina specialist who I am ever hopeful will be my new research director, Carl Regillo. Dr. Regillo was named to the 100 most influential ophthalmologists in the world list. I find that pretty impressive.

And moving right along, researchers are expressing “cautious optimism” concerning regenerative medicine (read “stem cells”) treatments for AMD. Vavvas of Massachusetts Eye and Ear clarifies they are transplanting “differentiated cells…derived most often from iPS cells” that were themselves derived from stem cells.”

IPS cells are induced pluripotent stem cells. They can be induced directly from adult cells. These cells are “regressed” back to a state that will allow them to reproduce theoretically forever and also to develop into any one of every potential cells in the body. Perfect for “replacement parts”.

In other words, iPS cells avoid the ethical dilemmas that can be associated with embryonic stem cells.

Vavvas cautions it is still early days for regenerative medicine and all of the hype may be just that. Hype. Testimonials and anecdotal “evidence” are not scientific.

Massachusetts Eye and Ear is reported to be blazing new territory by combining regenerative medicine with neuroprotection approaches. The second of these approaches involves attempts to slow down cell death.

Vavvas goes on to once again caution against false hope.

The Cambridge English Dictionary defines false hope as putting your faith in something that might not be true. Fair enough. I would agree the crazy headlines after Coffey published were more than a little over the top. I would agree we have miles to go before we sleep, to paraphrase Robert Frost. I would contend, however, that something that might not be true still has the potential for being true. And that allows me to hold out hope for a regenerative medicine treatment if not a cure.

What it comes down to for me is, you have to have hope in something. Being told you have a condition for which there is no treatment and no cure is, well, disconcerting, to say the least.

So which basket do you put your eggs into? Which treatment are you betting on to actually do something substantive for us? Or have you decided there really is no hope?

To quote another great poet, Alfred Lord Tennyson, it is better to have loved and lost than to never to have loved at all. It just might be better to have false hope than have no hope.

Neal Burton in a 2017 Psychology Today article wrote that hope is an expression of confidence in life. It is the basis for virtues like patience, determination, and courage. Not bad. I can live with those outcomes.

So, yeah. I know we need to be cautious, but I still have hope. I still believe regenerative medicine is going to come through for us. Which potential treatment do you believe in?

Written August 15th, 2o18

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Lights Please!

Lin will be thrilled. After the holiday I am going to work four days a week! No more multiple pages per day![Lin/Linda: You’re going to give these nice people the idea that I don’t LIKE to do your pages! ::grin::]

I have to say I have been easing off on my resolution to spend my ‘retirement’ doing domestic chores. The basement sort of broke my will. Tomorrow we take a load to the dump. Maybe after I get rid of all that, I will be motivated to start again.

In the meantime, there are all sorts of things happening in the world of AMD! Hurrah! Saved again from domestic drudgery!?

Healio ran a little piece saying the EU has granted the Lumithera LT-300 a “CE mark for treating dry AMD.”

Ok. I am clueless.

According to Wellkang Tech Consulting the CE mark – generally made with rounded letters – stands for the French for European Certified. (And no, I am not attempting the French. I was allowed to skip my last reading in my senior year. My accent was so bad, he did not want to listen to me!) It appears this means it satisfies “essential requirements” for a product to be sold in the EU.

Now, supposedly this thing is to offer “a safe and effective early-stage intervention for patients with early-stage AMD.” That makes it sound like it is shelf ready. Coming to a Walmart near you sort of thing. What the hey is it then????

The Healio article says it uses “photobiomodulation which involves noninvasive light-emitting diodes for the treatment of ocular disease.” Wonderful. I love sentences that tell me nothing or at least very little. Good thing I am a helleva researcher even if I say so myself.?

I followed a link to a 2016 Healio article talking about the LT-300 in clinical trials. Get to that in a sec’. Photobiomodulation is first.

Photobiomodulation, according to the American Society for Laser Medicine and Surgery, is a term used to describe the mechanistic/scientific basis for this photonic specialty and photobiomodulation therapy is the term for its therapeutic application. Yeah. The mud thickens.

Moving on, it looks like the category includes lasers, LED lights, and any form of non-ionising light. It appears light energy is being used to alter cells at the molecular level.

What I am looking at here is crossing my eyes, but my ignorant, social scientist guess on this is they are using light to alter cell functioning and, among possibly other things, reduce inflammation. The articles I was scanning mentioned red light several times. My mind immediately went to how blue light is bad for us, and how red light is at the other end of the spectrum. ROY G BIV, remember? [ROY G BIV = Red Orange Yellow Green Blue Indigo Violet]

Here is the disclaimer: I do not know what I am talking about here. That last paragraph was all ignorant supposition based on few facts. I don’t know. If you know something about this, speak up! I could use the help. I said I am a good researcher, not that I understand what I find.?

The 2016 Healio article, photobiomodulation improves visual acuity…suggested the red, yellow and infrared lights used in the study improved visual acuity and contrast sensitivity and – drum roll, please – shrank drusen. They appear to be planning its use with early stage AMD. The idea is to slow the roll to advanced forms of the disease.

There you go. Readers in the EU, go and find out about this thing. This might just be the first treatment for dry AMD. Wow.

Written June 26th, 2018

Next: Pushing the Envelope

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Supplies are Limited, So Act Now!

I tend to be pretty optimistic. I have said a couple of dozen times that this is the best time in history to be going blind and I stand by that. Because, you know what? It is only getting better!

A recent piece in healio featured APL-2. APL-2 met expectations in phase 2 clinical trials (proof of concept) and is rounding the base headed into phase 3. Go, APL-2!

Results of the phase 2 trials were, obviously, promising. There was a 29% reduction in the rate of growth of geographic atrophy lesions when APL-2 was administered monthly.

It is possible within a year or so dry AMD will no longer be considered a disease with no treatment. In other words, there will be a lot more hope.

Now granted, these treatments are not cures. But they are better than nothing. Nothing being pretty much what we have now. Would you prefer to go blind in 7.5 years or so without the treatment or in 9 or 10 years with the treatment? Yep. Thought so.

Admittedly, some subjects developed wet AMD with the treatment. Nasty side effect but they will work on that. It did not happen to a large number of folks.

As I have also said before, discoveries build on what came before. The APL-2 study targeted the C3 complement factor and got results. This lends further credence to the theory AMD is a function of the complement immunity system. There is now a strong suggestion we have the right target. There will soon be other treatments ‘leveled’ at that target. More progress will be made.

Phase 3 studies are to start sometime in 2018. According to the Apellis announcement they will be recruiting 1,200 subjects divided among several locations. I looked at clinicaltrials.gov but there is nothing yet listed. Be sure to watch that site for developments. Also, talk to your retinologist about getting into the study pretty dang soon. Lin told me one of the face book members has already been approached by her doctor. There are only 1,200 slots. “Supplies are limited, so act now!”?

Lin/Linda: Since sue wrote this page there has been additional, potentially contradictory information come to light. As usual, we would ask you to gather all necessary information for yourself and make an informed choice on any treatment. We are only one of many sources. And us? We have a few leads and will be following up on the contradictory information. Lin and Sue, girl detectives at your service! Stay tuned and if you have any clues, please share.

And if you want to advance scientific knowledge without subjecting yourself to an experimental treatment, the NEI is looking for subjects for a natural history study. Several measures will be taken, including genetic testing. They will be documenting the natural development of AMD and seeing if they can see any patterns and/or relationships. Not the type of study that will actually treat its subjects, but if you are needle phobic, it might be for you. Remember, Sun Tzu said if you know your enemy and you know yourself you do not have to fear the battle. This study, also discussed in healio, is being designed to let us know the enemy. Knowing yourself is your own problem!

So that is that for now. Hope you are staying positive. This really is the best time in history to be going blind!

Written March 3rd, 2018 Continue reading “Supplies are Limited, So Act Now!”

My Two Cents

Lin/Linda here.

My 2 cents which means ‘my opinion’.

This is my 4th year doing research about macular degeneration (mostly AMD), working with Sue on the website & interacting with members here. It is really frustrating not to be able to say, “take 2 pills and everything will be fine.” After all, we have pills that virtually cure other diseases, right? Or there are lifestyle changes you can make and you won’t need the pills. For example, if you have high blood pressure, you can lose weight, exercise and eat a certain diet, and you won’t need the pills. We can sometimes have blood drawn and are told we don’t have enough of …. so we take more of …. (fill in the blanks; I’m thinking of Vitamin D levels for one).

Unfortunately, we are not yet there with AMD and similar types of macular degeneration and other retinal diseases.

I’m writing this because I’ve had people tell me to be honest but optimistic. It’s hard for me to balance those two sometimes! I’ll first be honest, and then I’ll be optimistic. I hope you know that I care for and respect you. Why else would I be here?

What do we hear?

We are told by others with the disease, by doctors or in articles on the Internet about nutrients that are treatments (AREDS2? Saffron? Turmeric?) or that eating leafy greens (how much, how often?) is a treatment. Some sources even tell us of cures! We search for people like us and ask, “did this help you?” People say, “I ate … and took … but my AMD got worse.” Or “I ate … and took … and my AMD got better.”

How do we know what to believe?

There are things that we know about AMD: it is a disease with many potential causes (we don’t yet know what they are for any individual) and many risk factors and that everyone has a different combination of them (I have a recent post listing all the ones we know about so you can see what yours are). Our genetics – which includes heredity but also other genetic factors – may have the most influence on some people but not all. We can’t control that. Another big risk factor is age which is another thing we can’t control, darn it. ::smile::

What can we control?

Don’t smoke; keep your weight, blood pressure and cholesterol normal; get moderate exercise; eat eye healthy foods especially if your diet has been poor. Some people with AMD can be helped by taking the AREDS/AREDS2 supplements but some cannot. Some can even be harmed by them we now know.

Remember that they are called ‘supplements’ because they are to SUPPLEMENT our diet, not to replace eating well.

Unfortunately, we cannot yet look at a person’s genes alone or blood or diet or use of supplements and say “yep, that’s it!! That’s what caused it for you. Now do this.”

A lifestyle

I hope that you see that dealing with your AMD is very much a self-help process with input from your own research, your doctors, Sue’s pages and this group. What I’m talking about is that you need to develop an overall plan – a lifestyle – for YOU which includes:
– managing your blood pressure, weight, and cholesterol.
– getting moderate exercise.
– eating an eye-healthy diet.
– working on keeping the stress as low as possible, and if you can’t eliminate it, you can learn to deal with it in positive ways.
– taking supplements IF they’ve been proven safe & effective.
– keeping an open mind about using the MANY low vision aids that are available when and if you need them. There are so many more of than in any time in history and more are being developed every day.
– accepting that you may have to learn different ways of doing the things you used to do. We have examples of people who did this and have created ‘new normal’ good lives (Sue is one).

Supplements

We do not discourage talking about supplements and procedures. We are doing it, too. You may think that we are trying to keep you from taking or doing something that will make a difference when we share the results of our research that often says that something hasn’t yet been proven to be safe and effective. Why would we hide helpful information? Sue & I have been volunteering our time for years. I am here every day of the week doing what I can. My life would be easier if I could say “Take this and do this.” ::smile::

If we can’t tell you what to do, we can at least help by using our experience with proper scientific research to keep you from doing something that could harm you.

I’m constantly looking at the news in the field with the expectation that one day I’ll be able to share with you the good news that there is something that really CAN help control and reverse the damage that’s been done. There’s research that is making great strides in both of those aspects of the disease.

Are there reasons to be optimistic?

You bet there is! If you are even just reading the headlines of the posts in our group, you will see reasons to be optimistic. I’m not talking just about ongoing research. I’m talking about posts and pages from people in the group and elsewhere who have the disease and who live good ‘new normal’ lives – even thrive – with vision loss.

What can I do NOW?

1. Keep a positive attitude and know that you are doing the best you can with what you and the experts know currently. We are learning more as time goes on and there is to learn ahead!

2. Work on creating a healthy lifestyle. If you are new to your diagnosis, putting your lifestyle plan together is a critical process that takes time, education, help and support. You may not be ready to start down this path yet. When you are, we are here to help you every step along the way.

3. Think about ways you can adapt your life, your home, your workplace using the many low vision aids available both electronic and non-electronic.

OK, I’m done…for now! ::grin:: Thanks for listening.

Written 2/2/2018. Revised 1/7/2019.

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My New Career?

Not to belabor a point, but today did start as a rather poopy day. We had our first snow overnight. Just a couple of inches but it was the puppygirls’ first snow. My theory is this: when they went out and squatted to poop, they got cold, wet bottoms. Go inside and poop? No cold, wet bottom. Problem solved!

Of course, since my husband was first on scene and got to clean it up, he was NOT a happy camper. Not a good start to the day.

Then there was the snow itself. Getting to my eye appointment is a 90 mile trip one way. My husband does not like city driving and he does not like driving in the snow. Once more he was not a happy camper.

It is hard to explain to some people why we have been dutifully driving 90 miles one way, every six months just to be told my eyes are worse. “Please pay your copay.” For those kind of results, I could go five miles down the road!

However, it is all part of a master plan. I have real problems with defeat. Real problem being told there is no answer. If you cannot supply me with an answer, I will find someone who can!

So here I am, running to see Regillo every six months for the past two years….and I think I am getting closer!

First the good news/bad news. Or, in this case, bad news/good news. Although I find it hard to believe, I have fallen down below 20/400 acuity. Bizarre because I don’t feel blind and don’t think I function as a blind woman.. After all, I got the “you don’t look blind!” routine just last month.

However, the good news on that is my vision is now so bad, I can satisfy the truly awful vision requirement for the Astellas’ study that is supposed to launch in March! Regillo referred me again. Is this time four or time five? I have sincerely lost count. [Lin/Linda: I put the details to that study in Sue’s page The Waiting Game.]

He has also put me on the list for APL-2 which is supposed to go into phase 3 clinicals sometime in 2018. He started to offer me “something else” when we were talking about lamp stuff (which is apparently very dead in the water) and I surprised him by knowing exactly where he was going. Working on being memorable. I want my name at the top of the list. [Lin/Linda: Sue wrote about APL-2 in her page My Friend in Manila?]

Also thinking I may be getting closer because I got a new test today. They ran me on the autofluorescence test. This test uses a very bright light. When the image is examined, the areas of the macula that are already dead are black and the areas that are in distress shine. My eye probably lit up like a Christmas tree. If that gets me into a study and gets this stuff stopped? Good.

So, that is where we are. I got a new test. I chose to be hopeful it means they want more information for my new career as a lab rat! Regillo generally seemed positive. Maybe I will be going to Philadelphia.

Written Dec. 14th, 2017 Continue reading “My New Career?”

Maybe They Have Something

Good afternoon! It was a busy morning. My husband had to take the car for service so he dropped me off at the hospital for a shoulder x-ray and routine blood work. My shoulder pain is little better.

You would think I could just continue with up dogs, down dogs, planks, side planks and all those other yoga moves with no negative effects, but nooooo, my shoulder is really sore. It might have something to do with my not being as young as I used to be, but I doubt it.?

Then I walked down to get a haircut and Pizza Hut buffet lunch. Picked up by hubby. Grocery store. This year’s photos to the camera store for display. Home.

I have cleaning to do. I have a report to write. Oh, well. I have an OBLIGATION to our website!

At the end of last year Lin did a page on topical treatment for wet AMD. That means eye drops instead of shots. One of the ones she talked about was Squalamine. At that time Squalamine had failed to satisfy the efficacy standard laid out and the trials had been terminated.

Squalamine had failed to reduce the number of shots needed to keep crazy, blood vessel growth at bay. However, there were some secondary goals that were reached. According to the January 29, 2017 VisionAware, there were positive effects on acuity. This was especially true in people with a specific type of lesion. 31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!

According to healio.com a classic lesion in wet AMD has well-demarcated hyperfluorescence in the early part of the test and progressive leakage later on. It is not to be confused with occult or combined lesions.

Ohl Pharmaceuticals decided in February, 2017 to take the 200 people already enrolled and start in on phase 3 trials. In April Ohl announced it was amending the timelines of the study so there could be results late this year or early 2018. They also amended their goal to be an increase in visual acuity as opposed to a reduction in shots needed.

Now, I am wandering into the area of unsubstantiated speculation here, so don’t take what I say as gospel. OK ? OK. The April 10th press release alluded to the research being funded until early 2018. To quote: “Following the close of financing today we are funded until 2018 including completion of our ongoing clinical trial and data readout by the end of 2017 or early 2018.” Now if that were me and I were getting positive results, I would want to show off those results quickly and improve investments and other funding. If I had squat, I would stall and plead for just a little more time and MONEY.

In other words, I think they have something.

Another reason I think they have something? The press release said they were working with the patients who had “the greatest potential to benefit from Squalamine combined therapy”. In other words, they stacked the deck. (In my opinion, of course.)

Anticipating they rock the phase 3 study AND the FDA gives approval to ‘go live’ in a reasonable amount of time, a combination Squalamine/Lucentis treatment could be available in 2018. Cool. We are on our way.

Written October 9th, 2017 Continue reading “Maybe They Have Something”

Overcoming Uncertainty

Medical treatment is a very uncertain proposition. Writing for the Journal of Graduate Medical Education Wray and Loo quoted Sir William Osler as saying “Medicine is a science of uncertainty and an art of probabilities”. The authors report that rarely is evidence of benefit totally clear-cut when a treatment has been administered. Also, it is rare for practitioners to agree totally on a treatment.

Sometimes opinions are expressed in such a robust manner by both that the patient is left in a quandary. How are we supposed to know who is correct? What are we supposed to do now?!?!

Wray and Loo suggest doctors (and others) look at the evidence. Is there evidence suggesting one treatment is superior to another? What does the research say?

Lin and I are big on research. The truth will be seen in the research. Notice I used the word will, future tense.

Work being done on AMD causes, treatments and maybe even cures is in its infancy. Like all infants, things are subject to change. The infant with blonde hair and a little button nose who you think looks just like your father may grow up to have brown hair and a ‘beak’ just like his uncle on the other side of the family! Final results subject to change without notice. Wait and see.

So many doctors don’t like to say they don’t know. Wray and Loo say it is a mark of professionalism to be able to discuss the pros and cons AND the uncertainties of a treatment, but how often does that happen? Maybe there is not enough time. Maybe they are uncomfortable being fallible. Maybe they think we can’t take it.

Wray and Loo talk about the emotional burden of uncertainty. Uncertainty is nerve-wracking. Many of us feel better believing any plausible nonsense than being told there is, as of yet, no answer.

The problem with believing strongly in something uncertain just so we HAVE an answer? When you find out your life-preserver is actually a cement block, you are too invested in it to let go!

How to handle uncertainty. I actually had to smile because when I went online what I found was totally in line with DBT. If you want to go back to the DBT pages, have at it.

Travis Bradberry, a positive psychology proponent, shares 11 Ways Emotionally Intelligent People Overcome Uncertainty. Bradberry tells us our brains are hardwired to react to uncertainty with fear. He quotes a study in which people without information made increasingly erratic and irrational decisions.The diagram Bradberry showed was a brain and his caption said “uncertainty makes your brain yield control to the limbic system. You must engage your rational brain to stay on track”. Sounds three states of mind-ish to me.

Beyond that, Bradberry suggests calming your limbic system by focusing on the rational and real, being mindful of positives, taking stock of what you really know and don’t know, embracing what you cannot control (also known as accepting reality), focusing on reality, not trying to be perfect, not dwelling on problems, knowing when to listen to your gut, having a contingency plan (what I have always called plan B), not asking what if questions and – guess what! – breathing and being in the moment.

Hope this helped some. Remember this journey is not a sprint, it is a marathon. In fact it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually we will find the way.
Continue reading “Overcoming Uncertainty”

This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

Continue reading “This and That”

Eyes Open, Mouth Closed

TGIF! In real time, welcome to the weekend!

In the interest of fair and unbiased reporting, I am once again writing about wet AMD…..well, actually I am writing about intravitreal injections, a topic many more of us are going to be interested in very soon. Although there seem to be PLENTY of you wet folks getting the shots already. Did you know intravitreal injections are the most commonly performed medical procedure in the US? According to a 2015 Review of Ophthalmology article, Updated Guidelines for Intravitreal Injections, the numbers are twice what they are for cataract surgery. That makes sense considering people only ever have two cataract operations as opposed to perhaps 24 or more injections in a year alone. No matter the logic behind the numbers, though, that is still a lot of trips to the doctor.

Anyway, when shots first started in 2004, there was a ‘best practices’ paper written. That paper was revisited in 2014.

One thing I noticed? You chatty people should stop trying to engage the doctors and nurses in conversation! That was suggested back in 2004 and has been supported in more recent literature.

Why, you may ask. Do you remember when your parents told you not to bite (or get bit!) because the human mouth is filthy? They were right. Mouths are ridiculously germy.

Healio reported a strict ‘no talk’ policy during injections causes substantial difference. Chatty doctors had seven cases of infection due to oral pathogens. Doctors who did not talk had two. Granted, these numbers were over a total of over 47,000 injections, but do you want to be the one with a raging eye infection? (That answer should be ‘no’.)

And if you asked to have a companion for ‘moral support’ and got told no? Infection was probably the reason. Doctors can control whether they speak or not, but they have no control over people you bring with you. They are not being cruel. Leave the motor mouth in the car.

Other things in the best practices paper were equally common sense. Use adequate antibiotics and anesthesia. Monitor intraocular pressure. Wash your hands! The whole idea is to reduce discomfort and reduce infection, not necessarily in that order.

Pretty much, the lesson is: avoid infection. Make sure you have a nice, clean face and hands when you get there. Understand why you cannot have people with you. Be quiet and allow the medical staff to be silent as well. Although the paper said masks and sterile drapes are optional, if you want them, you have the right to request them.

Once again, the goal is to keep you comfortable and – more importantly! – keep you from having eye infections. Stay healthy! In the end, the responsibility is on you. Speak up about concerns. If they won’t cooperate, look for other resources. Continue reading “Eyes Open, Mouth Closed”

A Dozen Years of Progress

Here I am again, trying to offer a balanced look at AMD. Rumor has it the wet folks are wondering when they will get consistent coverage of their issues. Dunno.

When are we getting someone with wet AMD to write for us? You write. We publish. Until then, I can throw a few pages together, but my problem is dry. I cannot even begin to speak to the subject as well as someone with wet could. Consider it.

Found an article from BrightFocus Foundation. Title: How Effective are Age-Related Macular Degeneration Treatment? At the risk of sounding like a broken record, I like how the author points out there were very few treatments a scant 12 years ago. As the baby boomers we continue to drive many, many things in the world. Pig through the python; yes? We are now losing our vision and unless something is done, we are going to break the bank with our care needs. People respond to numbers, large numbers.

Which brings me to, did you know there are something like 200,000 new cases of CNV (wet AMD) every year in the United States alone? That is from CATT at 2 years: the facts.

I got to the CATT study because the BrightFocus article (above) referred to it. It is a 2010 study that seems to remain pertinent today. It was mentioned with ANCHOR, MARINA and HORIZON. These are all efficacy studies for your ‘shots’.

In the ANCHOR and MARINA studies Lucentis was proven to improve vision several lines on the chart. This was in the short term. The HORIZON and CATT studies were longer term and in these some gains were lost.

The VIEW trials suggested Eylea every eight weeks is superior to Lucentis every four weeks. However, more study is needed.

Avastin is a cancer drug. Injected into the body, it inhibits growth of new blood vessels in tumors. It tries to starve those, nasty things. Off-label use of Avastin for CNV has shown similar efficacy to Lucentis.

A big selling point for Avastin is cost. The article suggests it is $50 a shot. The others are thirty to forty times that much! Insurance problems? Talk to your retinologist about Avastin.

The BrightFocus article ends with good news. Did I mention I like this guy’s attitude? He reported a more recent CATT finding was 50% of patients retained 20/40 vision in the treated eye five years after the start of anti-VEGF treatments. Only 20% had 20/200 or worse! What do you think of those apples?

Again, these gains are in little more than a decade. How can you doubt more great things are coming and coming fast?

OK. How’d I do?

written July 1st, 2017

Continue reading “A Dozen Years of Progress”

Blast From the Past

And now, you have been asking for it, I present WET AMD!

Not that I have any first hand experience with the stuff nor do I wish to but I found an article on the history of treatment and thought I should share it. Feel free to chime in.

Preview of coming attractions…or a review depending upon how fast Lin gets her AMD timeline done…the first treatment for wet AMD was laser coagulation in 1979. That folks was less than 40 years ago. That would have been when some of your parents were dealing with AMD and vision loss. Before lasers? Nada. Again, this is not your parents’ AMD.

Since zapping little, tiny bleeders was not an exact science (remember, this was before Blaster Master and other now classic video games. Few people were that skilled), there were some misses. That’s when they came up with Visudyne, a drug that helped to ‘light up’ the target. A specially designed laser activated the Visudyne which selectively destroyed the bleeders. Better but still not great.

The article, Macular Degeneration Treatment from AMDF, went on to talk about 3 problems with laser treatment of CNV bleeders. First, because bleeders may have been too large or poorly delineated, only about 10 to 15% of them could be treated with lasers. Second, there was a 50% chance the leak would reoccur in two years and third, 50% of the treated patients still had subfoveal leakage. Also mentioned was the possibility of technicians with bad aims and further, inflicted damage.

Anti-VEGF is put into use in 2004. We land a Rover on Mars. Lord of the Rings is best picture and Harold Shipman is found hanged in his cell in Manchester, UK. Remember 2004? That was not that long ago! 2004 seems like yesterday, but since then, 13 short years ago, in some parts of the world, Anti-VEGF has reduced the rate of legal blindness by 50%. Wow!

Of course nothing is perfect. Vascular function in the rest of the body has been a worry for some. However, stroke data has been inconclusive. There have been cases of eye infections, increased eye pressure, retinal detachment and floaters.

Not sure where we will be going from here with wet AMD. Some of the work being done on dry AMD will head off both cases of wet and GA. Recall wet and GA are both advanced stages of the disease. New delivery systems are being developed and researchers are kicking around phrases like platelet-derived growth factors, receptor antagonists and immunomodulatory therapy whatever they are. It is a brave new world and we are getting to be part of it. [Click here for the most recent review of research for both dry and wet AMD.]

There you have it: my attempt at fair and unbiased reporting. I will try to do some more about wet AMD but, frankly, the effort may not last. We really need someone to cover this ‘beat’. Any takers? Continue reading “Blast From the Past”

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:

BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.?

Continue reading “BIG News!”

Quack, Quack

Caveat emptor! That is Latin for “hold on to your wallet!” (Actually it means “let the buyer beware!” but close enough.)

As of late we have been hearing about ‘medical professionals’ offering services that sound pretty much like quackery.

You know the old saying: if it walks like a duck and quacks like a duck, and looks like a duck, it is probably a duck. The problem is some of us don’t know what one of those old ‘quackers’ looks like.

Ergo, I am offering a short tutorial on identifying the ‘ducks’ among us (Great. Another ‘ornithology’ lesson ?).

You can find dozens – literally dozens; makes me kind of sad about the ethics level in America – of posts talking about how to spot a quack. Skeptical OB gives a shortlist of six red flags that can be applied across the disciplines. They report quacks make claims of secret knowledge and giant conspiracies. They baffle with bullshit and claim they are so revolutionary they threaten the medical establishment. Claiming toxins in everything is a biggie. Also flattery. You have heard it. How you are doing such a great thing and blazing the path for others? Yeah, that one.

There are also posts talking about how to spot quacks in more specific areas. Quackwatch.com has a list of 26 ways to spot vitamin pushers.

Some financial ways of identifying quacks are listed by USA Today. Reputable doctors do not ask for deposits or cash up front. Potential quacks offer the most amazing – and expensive! – treatment first and don’t even bother attempting other treatments. Not covered by insurance? Be suspicious and ask lots of questions.

To support some of the points in the Skeptical OB post, USA Today points out science is pretty much a team sport and very few people make discoveries all by themselves in their garages anymore. Things are just too complicated and too expensive these days.

The idea of the dashing, undaunted, brilliant rogue doing his research alone at night (I just flashed on Dr. Frankenstein here; sorry.) is romantic but obsolete.

Testimonials are great at funerals and ‘roasts’ but anyone who has had to write a recommendation knows such things are easily slanted and misinterpreted. I am stopping short of accusing anyone of outright lies or psychotic delusions, but if all the treatment has to back it is testimonials? Put away the credit card and leave.

The problem – or one of the problems, I should say – with quacks is they go after the vulnerable. Sleazy sons of sea crooks. Are some of us desperate? Absolutely. We don’t want to believe medicine is not yet in a position to help us.

USA Today suggested one of the things I have been harping about now for months: sign up for a clinical trial. Even though ‘mine’ have been stalled for months and driving me insane, mainstream research is where the action – and the hope – is.

Minimally go for a second opinion before you commit to any treatment, but especially if it looks a little murky based on some of the red flags we have talked about. If your treatment provider tries to discourage you, he might be hiding something (like he’s a quack, for example!)

Thus endeth the lesson on ‘foul’ identification?

Be safe out there.

written April 14th, 2017

Continue reading “Quack, Quack”

I Promise

Greetings! Beautiful day. Sunny but cold. 37 degrees Fahrenheit. My friend who is ever concerned about my welfare knew my husband had pumped up my bike tires and thought today would be perfect for me to join her in a bike ride. Yes, I want to ride, but it is 37 degrees! Whoa.

New washer came bright and early this morning. I am actually very glad to be able to get some laundry done. Classic example of not appreciating something until it is no longer there.

Which brings me to our vision and a problem I heard about the other week. At least one member has retinal scarring. If one person has it, I suspect others do as well. I tried to look it up online and there was surprisingly little. Everything I found turned me around to macular puckers and holes. They are obviously all related, but what I was looking for was scarring in particular. If you find any good info, please share. Maybe write a page?.

According to WiseGeek, retinal scarring is exactly that, scar tissue on and under the retina. Small scars are not that big a deal. Our wonderful brains just sort of erase them. However, big ones make problems by giving us visual distortions and loss.

What types of distortions? According to WiseGeek the Amsler Grid may curve and/or parts of it may pull out of position. Reading can be just about impossible for people with large retinal scars.

Cause of retinal scarring can be pretty much anything that causes the retina to become inflamed. That would include injury, illness and wet AMD. Repeated inflammation leads to the potential of bigger scars and more vision loss.  [Lin/Linda here: I found an article that says “People can develop retinal scarring from severe myopia, ocular histoplasmosis syndrome, and wet age-related macular degeneration (AMD). Scarring results from inflammation, caused by irritation of the retina. Severe occurrences  can cause swelling of the retina, wrinkling of the surface tissue, or even retinal detachment.” The article also talks about research into a compound that may prevent scarring in the first place.]

You hear the cautionary note there? For you folks with wet, very few things are more important than keeping up with your treatments and preventing irritation to your retinas.

Repeat after me: “I promise I will get my treatments in a timely fashion. So help me God.” Now spit in your hand and virtually shake….yuck. Who came up with that spit in your hand business? Obviously knew nothing about viruses and bacteria.

Treatments for retinal scarring appear to be limited at this time, of course. Because the available treatments are invasive, often the first ‘treatment’ is watch and wait. Other treatments are vitrectomy and something called a membrane peel.

We talked about vitrectomies in the past. In that procedure the gel like substance in your eye is drained. That substance, the vitreous, has string-like things in it that can adhere to the macula and tug. These ‘tugs’ create puckers, holes and scars.

Epiretinal membrane peeling is described in an article by Hampton Roy. The title is, aptly, Epiretinal Membrane Treatment Management. My interpretation is that in a peel, the surgeon teases off the upper layer of the retina. Maybe like trying to take off just one cell layer of an onion? Roy goes into explanations on a few different types of peels. My assumption is their assumption is the scar will be mostly in the top layer and can be removed this way.

So now you know everything I think I know about retinal scarring and its treatment. Remember, I am not a doctor and you should assume I know nothing when it comes to pretty much anything. The great majority of what I think I know has come off the web. Always check with your doctor. Continue reading “I Promise”

Highlight: Here’s a GREAT website especially for those with wet AMD

Lin/Linda here: Every once in a while I find a website and/or Facebook page that stands out.  Here’s one of those.

The website and Facebook page are called The Science of AMD: Our vision is to save your vision.  It is presented by the Amgiogenesis Foundation. Their headquarters are in Cambridge, Massachusetts.

Click here to go to the website. From there, you can connect to Facebook, Twitter or YouTube using icons in the upper right corner.

What is angiogenesis? From the website: “Angiogenesis is the process used by the body to grow blood vessels. In healthy adults, normal angiogenesis occurs in healing wounds and reproduction, but in all other situations, it is abnormal.”

It’s what causes wet AMD: “Wet AMD is caused by abnormal angiogenesis, when new vessels grow under the macula, disrupting the central region of the retina. These new blood vessels bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, impairing central vision. If left untreated, scar tissue can form, and central vision is irreversibly lost.” 

What’s so special about the website?
  • From a design standpoint, you can change the size of the font and the color of the font & background, you can choose a version of the site in any of 7 languages as depicted by flags, it’s easy to navigate.
  • Format of content includes printed text, videos, audio, graphics, PDF files and more.
  • This is not just for the US, there are resources available for other countries as well.
What information can I find there?

There’s a menu with Learn, Treat, Resources, Connect, About, Donate.  I suggest you start at Learn!   The emphasis is on how angiogenesis causes wet AMD and what can be done to treat it.

OK, now go and explore! Let me know what you think!

Highlight: What is Myopic Macular Degeneration?

There are quite a few eye diseases that cause degeneration of the macula. The most common forms of macular degeneration are defined by age, at least in part:  1) Age-Related MD (AMD or ARMD) and 2) Juvenile MD (JMD) – several inherited and rare diseases that affect children and young adults including Stargardt’s Disease, Best Disease, and juvenile retinoschisis.

There is another form of macular degeneration called Myopic Macular Degeneration or Myopic Maculopathy.

What is myopia?

If you have trouble seeing things far away like road signs, your eye doctor may have said that means you are nearsighted because you can see things near better than far.   Some people call it being shortsighted.  The medical/optical term is myopia.

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

Myopia occurs when the eyeball is too long relative to the focusing power of the cornea and lens of the eye (see diagram above). This causes light rays to focus at a point in front of the retina, rather than directly on its surface.   It can also be caused by the cornea and/or lens being too curved for the length of the eyeball. In some cases, myopia is due to a combination of these factors. Click here for more information.

There are different degrees of myopia: mild, moderate and high (also called pathological myopia).   The higher the degree, the higher chance of the degeneration of the macula.  Click here for some other risks for high myopia including retinal detachment, macular detachment, glaucoma and macular holes.

Myopic Macular Degeneration

People with high myopia/pathological myopia are at risk for damage to the macula from the stretching of it as the eyeball grows throughout life.  Here’s a good description of what happens: “As the eyeball grows and stretches, it may also cause an area of atrophy and/or cracks in the layers under the retina. These cracks can serve as conduits for abnormal blood vessels to grow under the retina. These vessels can hemorrhage and scar which is similar to what happens in wet macular degeneration. The onset of the nets of abnormal blood vessels, called Fuch’s spots, often occur in the 4th to 6th decades of life. Approximately 5% of pathological myopia patients develop Fuch’s spots, which lead to damage in the macular region of the eye and a subsequent loss of central vision.” From http://www.lowvision.org/Pathological%20Myopia.htm

Not all people who are myopic get Myopic Macular Degeneration.

Click here for an explanation of how the atrophy can occur as well as how the blood vessels grow into the macula.

The symptoms are similar to AMD & JMD as well.  Click here to learn more about them.  This article will take you to stories of people who have Myopic MD.

Click here for a first-hand account of the disease from a person with it.

Other links:

Myopic Macular Degeneration

American Academy of Ophthalmology Diagnosis and Treatment of CNV in Myopic Macular Degeneration

Degenerative Myopia

Treatment Patterns for Myopic Choroidal Neovascularization in the United States, article published July 2017 edition of AAO Journal (AAO is American Academy of Ophthalmologists).

 

 

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

 

 

 

 

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