macular degeneration, macular, diagnosis Non-AMD Eye Problems – My Macular Degeneration Journey/Journal

Myopic Macular Degeneration: Understanding the Basics

by Frank Chen (see his biography at the end of the article).

The prevalence of myopic macular degeneration is on the rise worldwide, and new research is providing greater insight into this complex condition. As our understanding of the condition continues to evolve rapidly, staying up-to-date on the latest developments is crucial — starting from the fundamentals.

Myopic macular degeneration is a debilitating eye condition that affects millions worldwide, leading to a gradual loss of central vision. Like age-related macular degeneration (AMD), myopic macular degeneration affects the central part of the retina, causing symptoms such as blurry vision, distorted vision, and loss of visual acuity.

However, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age than AMD. In this article, we will discuss the key terms and definitions related to myopic macular degeneration, its causes and prevalence, and the treatment options available to manage the condition.

Understanding the Key Terminology of Myopic Macular Degeneration

Myopic macular degeneration is an eye condition that is becoming better understood through ongoing research. As we learn more, terms and definitions evolve or are added to our understanding of this condition. Here are some important terms to know:

Myopia: This is a common refractive error that causes distant objects to appear blurry. It occurs when the eyeball is too long, or the cornea is too curved, causing light to focus in front of the retina instead of on it.

High myopia is a more severe form of myopia, usually defined as more than -6.00 D in diopters. It is often confused with pathologic myopia, which causes degenerative changes in the back of the eye.
Pathologic myopia occurs when the eye grows too long, leading to changes in the back of the eye. These changes can cause problems such as blurry vision, difficulty seeing in low light, and even vision loss.

Myopic Macular Degeneration (MMD) is also called myopic maculopathy (MM); it is one of the most common types of pathologic myopia. It occurs when the cells responsible for sharp, detailed vision in the eye start to die. And patients gradually lose central vision.

Myopic chorioretinal neovascularization (myopic CNV) is also referred to as myopic macular neovascularization (MNV) in many publications. It happens when abnormally new blood vessels grow under the macula. As blood and fluid leak into the macula, it damages the retina cells, which leads to vision loss.

Causes and Prevalence of Myopic Macular Degeneration

Myopic macular degeneration is a condition that affects the central part of the retina, known as the macula, and causes it to degenerate. This can result in symptoms such as blurry or distorted vision, dark or empty areas in the field of vision, and a gradual loss of visual acuity over time, similar to age-related macular degeneration (AMD).

The exact cause of myopic macular degeneration is unclear, but several factors are believed to contribute to its development. These factors include elongation of the eye, cracks in the retina, and protrusion or bulging of the back part of the eye (myopic conus).

As myopia is becoming increasingly common worldwide, studies found a rise in the prevalence of myopic macular degeneration. It was projected that by 2050, around 50% of the global population could have myopia.

Furthermore, the risk of developing pathologic myopia, which could lead to myopic macular degeneration, increased with higher degrees of myopia. Age was also a significant factor, as individuals with high myopia aged 40 or older had a higher risk of developing pathologic myopia.

Studies showed that pathologic myopia affected approximately 1-3% of Asians and 1% of Caucasians. Pathologic myopia was identified to be the leading cause of irreversible blindness in several Asian countries. While in Western countries, it ranked as the third leading cause of blindness. Both ethnicity and country of origin seemed to play a role.

Treatment for Myopic Chorioretinal Neovascularization (Myopic CNV)

Several treatment options are available that can help slow the progression of myopic chorioretinal neovascularization (myopic CNV) and improve vision. The primary treatment for myopic CNV is anti-VEGF therapy, which includes several different drugs like ranibizumab (Lucentis), aflibercept (Eylea), and conbercept (Lumitin). Although bevacizumab (Avastin) is not FDA-approved for myopic CNV, it may still be used as an off-label treatment due to cost.

In cases where anti-VEGF therapy is not suitable, verteporfin photodynamic therapy (vPDT) may be recommended. However, vPDT didn’t show significant improvement in visual acuity and could damage the retina cells, leading to a worsening of vision instead. Therefore, intravitreal anti-VEGF therapy is considered the standard-of-care treatment for myopic CNV. As with any treatment, there are benefits and risks. Therefore, it is important to discuss treatment options with your healthcare provider to find the most effective and appropriate treatment for your specific situation if you have myopic CNV.

Key Takeaways

In conclusion, myopic macular degeneration is a serious eye condition that affects millions worldwide, leading to a gradual loss of their vision. While it shares similarities with age-related macular degeneration, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age. With the rise in myopia prevalence worldwide, understanding the latest development, starting from the fundamentals, is essential.

Fortunately, there are treatment options available for myopic chorioretinal neovascularization. And it is fueled by ongoing research and innovation, providing hope for a bright future for people living with this condition.

About the Author

Frank Chen is a highly experienced health educator and medical writer with almost two decades of experience in the healthcare and pharmaceutical industries. He holds a Bachelor of Science degree and an MBA, and is also certified in nutritional sciences and medical writing, bringing a broad range of knowledge to his work. Frank is deeply committed to enhancing patient health literacy and promoting better patient outcomes. His passion for helping patients understand their health conditions is evident in his exemplary education work for ocular conditions at clearsightcorner.com.

Frank has collaborated with top medical experts in ophthalmology, diabetes, and cardiovascular fields throughout the years. He has also played vital roles in developing and implementing patient communication or support projects that have had a profound positive impact on the lives of hundreds of thousands of patients across multiple countries.

Article published Feb. 25th, 2023.

Back: Guest Author Pages

 

What is Myopic Macular Degeneration?

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

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

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

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

Potential Problems from Pathological Myopia

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

Myopic Macular Degeneration – CNV

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

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

MMD and AMD

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

Treatment

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

Supplements

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

Living and Thriving with MMD

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

Research

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

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

Facebook Groups

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


go back to frequently asked questions

 

Don’t Panic!

If you ever read The Hitchhiker’s Guide to the Galaxy – and I would recommend you read it if you have not and/or recommend you read it again if you have – you may remember one bit of sage advice : don’t panic!  This bit of advice is offered repeatedly to our hero, Arthur Dent, as he travels through the Universe, fleeing from the destruction of the Earth to make way for an intergalactic bypass and seeking  to find the answer to the questions of life. That answer, by the way, is “42”.

Don’t panic! You don’t have to understand it. Just enjoy the workings of a delightfully warped mind. Thank you, Doug Adams!

And I repeat: don’t panic! Lin informed me there was recently a piece on the possible links between age-related macular degeneration and Alzheimer’s. She remarked a few of you, well, panicked. Don’t do that!

Is it possible? Of course it is possible. The eye is the only part of the brain we can actually see without any messy surgeries or fancy machines. As part of the brain, your eye can, of course, get “brain- diseasey” things going wrong.

This does not, however, mean we are doomed to get dementia!

A couple of things to keep in mind. Number first: these are the very early days of this research. We really do not know much. Number second: the studies I saw were correlation studies. Correlation does not mean causality. In other words, just because two things look to be related it does not mean they are. And it especially does not mean one caused the other!  Serious logical boo boo there.

I found the article I believe the other source was citing. I also found a 2014 JAMA Ophthalmology piece on the Association Between Age-Related Macular Degeneration, Alzheimer’s and Dementia. This was also a correlational study. After comparing nearly 66,000 AMD patients and nearly 17,000 Alzheimer’s patients the researchers discovered “considering AD and other dementia after AMD, their coexistence at the individual level is no different than that expected by chance.” In other words, they did not see ant evidence that AMD leads to Alzheimer’s.

Meaning? Don’t panic!

That said, you, me and just about everyone else I know would not get in line if the sign said “Get your Alzheimer’s here!”  I would run rather rapidly in the opposite direction. In fact, I am “running” in the opposite direction several times a week right now.

I am doing this by actively working on my health and my cognitive skills. Vascular disease seems to be related to both AMD and dementia. It is important to take care of your heart and circulatory system.  Take your medication, eat right and exercise regularly.

Much of my exercise is repetitive, rhythmic activity. That means I am thinking pretty much all of the time I am moving. I tell my hip hop instructor he is my secret weapon against Alzheimer’s. Just trying to figure out his steps and follow along give me as much a mental workout as the actual dancing gives me a physical workout.

I am also still working, playing video games (silly, easy ones), socializing, traveling, writing a blog and reading. In other words, if “use it or lose it” applies to cognitive skills, I am doing all I can to keep using them. Not lose them.

Bringing me back to Doug Adams and The Hitchhiker’s Guide to the Galaxy. If you want a few mental gymnastics, read and follow along if you can. Watch those wicked, left turns. And by all means, don’t panic!

A Freckle in My Eye

First of all a point of information: 3-D movie glasses do fit over Max TV glasses. A friend and I went to lunch and a movie yesterday, and I was able to wear the 3-D specs as well as my Max TV lenses….just in case you were wondering. ?

As I said in another post, I was at the new retinologist last week. He found something new: a “freckle”.

I really hate it when they get cutesy. A personal peeve. ?….and yes I have a new documents app with all sorts of emoticons….I guess I consider it an insult like I would not know what a nevus is.  Another reason I hate cutesy terms is it makes me wonder what the doctor is hiding.

A nevus is a mole. I probably have a couple of hundred skin nevi.  I have always been a pretty mole-y person. Better than moldy; yes? [Lin/Linda:  there’s no emoticon for ::groan:: or ::Linda rolls her eyes::]

According to WebMD, “freckles” or nevi in your eye are fairly common and generally not harmful. They do, however, have a less than 1% chance of becoming cancer, specifically melanoma.  Melanoma is a type of cancer that begins in pigment-producing cells. Nevi are collections of pigment-producing cells.  Makes sense.

While you can have nevi on the whites of your eye (conjunctiva) and the colored parts (irises), they can also occur inside on the choroid. That is where mine is. AMD and nevi occur more often in whites and older people. They may appear more in people with more sun exposure. However, I could not find anything that said choroid nevi and AMD are somehow connected, even if it were only a correlation.

Just the same, choroid nevi can sometimes have results similar to wet AMD. Paul Finger writing for eyecancer.com stated that rarely – that was RARELY – a choroid nevus can leak fluid or be associated with the growth of abnormal blood vessels.  It can lead to a localized retinal detachment and/or degeneration. It is also possible for drusen to develop on top of a nevus.  This is a sign the nevus is not allowing your eye to remove the metabolic waste, i.e. “eye poop”.

It is a good idea that you maintain regular eye care not only for your AMD but also for any nevi you might have.  While there is no treatment – and no treatment required – for run-of-the-mill choroid nevi, your retinologist will be able to tell if there is a developing problem. An orange color, fluid leakage and increased thickness can mean trouble and that nevus should be watched closely.

So, yes, just one more thing that can go wrong with our eyes. But the good news is this: being told you have an eye “freckle” does not mean your retinologist is hiding anything by being cutesy. There is less than a 1% chance of real trouble. Regular eye exams will allow that nevus to be monitored and sunglasses will help the pigment in your eyes just like sunscreen helps to protect the pigment in your skin.

Now you know.

PS Finger reported choroid melanoma has been found more often in those with blue eyes and outdoor occupations. It has also been found more often in Australia.  Apparently, there is a hole in the ozone over Australia and this allows more ultraviolet through.

So,  to our friends down under, be careful and wear your shades!

Written November 19th, 2018

Next: Lemons and Lemonade

 

Sue on Assignment: Non-genetic Causes of Macular Degeneration – Page 2

Back to the Patient article on Inflammatory eye diseases that can sometimes cause atrophy and scotomata. Our next broad topic after parasites – yuck- and viruses is fungal infections.

Histoplasma capsulatum can “cause vision problem related to exudative maculopathy.” Translation? Oozing, diseased macula. This page is just one happy thought after another!

Then there are mycobacterial infections. A quick search revealed (using the Merck Manual) that certain forms of mycobacteria cause tuberculosis. Another one causes leprosy. As most of us know, these two diseases are now rare in developed countries. However rare, though, don’t count them out yet. Yours truly tests positive for TB.

Then we get to the spirochaetal infections. Syphilis can affect various parts of the eye, including the retina. Ocular syphilis is rare.

How about Lyme disease? Reading this article I discovered that is a spirochaetal infection as well.

Personal observation of people and animals with Lyme disease has led me to believe it can attack any of the body systems. When it attacks the eye it can cause a number of issues including retinal vasculitis and exudative retinal detachment.

Retinal vasculitis is, according to Wiki, inflammation of the branches of the retinal arteries. This condition can cause blurred vision, floaters, scotomata and decreased ability to distinguish colors. Sounds like someone I know.

Wikipedia lists several, other reasons for scotomata. High blood pressure can damage the retina. Ingestion of wood alcohol is another thing. Ethambutol is an anti-tuberculosis drug that has been found to have the potential for damaging the retina. Quinine is another. Quinine is, of course, for malaria as well as some other things of which I am not aware. Nutritional deficits can also cause retina damage. In short, there are probably a couple of dozen different ways to have retina damage without a genetic cause.

So that is what I found for my first, member-requested assignment. Macular atrophy does not necessarily have to come from a genetically-based condition such as AMD or diabetes. There are a large number of diseases and even poisonous substances that can cause damage. I have mentioned a number of them in this page as well as the previous page.

I know Lin has a few things she wants me to look into, but that does not mean I won’t do requests from YOU. Keep those cards and letters coming. What else do we want to learn about?

Written September 29th, 2018

Go back to the list of “On Assignment” pages

Sue on Assignment: Non-genetic Causes of Macular Degeneration – Page 1

Good evening! Hope everyone is well.

I have my first assignment from a reader/ member! She asked about non-genetic causes of macular degeneration.

When I started to research, I thought I was going to fail my first assignment! I found a list of over 50 causes of blindness, and the great majority of them had a genetic basis. According to the Cleveland Clinic, 60% of cases of blindness in infants are genetic. Add such things are glaucoma, basic refraction errors and AMD and a good portion of vision problems are, indeed, genetic. It does appear we are made with some planned obsolescence in the design!

Then I looked again (and yes, Lin gave me a nudge in the right direction), and I realized the reader had asked more specifically about viral or other disease causes. That search yielded much better results.

Here goes…

Retinas can be affected by a wide variety of diseases. There are all sorts of articles on ocular infections. Things such as ocular toxoplasmosis can cause retinal infections particularly in individuals who are immunocompromised. Toxoplasmosis is a parasite frequently found in cats. The endpoint of ocular toxoplasmosis is scarring. Depending upon where on the retina the scarring is located, vision may or may not be compromised.

The Patient (March 12, 2014) article on Inflammatory Retina Diseases went on to mention several other diseases that can cause severe visual impairment. Keeping to parasites, dog and/or cat roundworm can cause ocular toxocariasis. The larvae can migrate to the back of the eye and die. Lovely thought. Apparently dead roundworms in your eye can cause retinal fibrosis (read scarring) and even retinal detachment. Yuck.?

And continuing in that vein, diffuse unilateral subacute neuroretinitis (DUSN) is caused by, not dead larvae, but larvae poop! This disease can cause scotomata (blind spots) and floaters. Depending upon where the larvae poop is, it could potentially affect the macula, but wherever they go, DUSN is sight-threatening. Another yuck.

Moving on to infectious disease, The Patient reviewed the effects of herpes on eyes. Not necessarily talking “social disease” here. Herpes simplex causes cold sores. Varicella zoster is a herpes virus. It causes chickenpox and shingles.

When left untreated in eyes the herpes virus can wreak havoc. It causes scar tissue and once again depending upon where that scarring is, there can be significant vision loss. Also, without treatment herpes in one eye will spread in the other eye in a whopping 65% of cases. Herpes eye infections can also cause retinal detachment and optic nerve damage.

I am starting to think I would rather the parasites. Yuck.

Cytomegalovirus (CMV) is, according to the Wiki people, another member of the herpes family. The CDC reports CMV is in half of all adults over 40. While it generally does not cause problems in its host, CMV can reactivate. In the eyes, CMV can cause hemorrhages and necrosis of the retina. Necrosis is a fancy name for death.

And I haven’t even gotten to the fungi yet! I guess that means I write a follow-up page on this.

Yuck.

Written September 28th, 2018

Next: Sue on Assignment: Non-genetic Causes of Macular Degeneration – Page 2

Back to Sue on Assignment Menu

Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Vision 20/20

Good morning! This domestic goddess business has got to end. I have been cook and pool girl as well as laundress and puppy lifeguard not to mention dishwasher and sweeper person already this morning. Give me a simple day at the office!

First of all, Lin sent me the stats for the website. We owe all of you a HUGE debt of gratitude. Thank you! Our stats are wonderful and that is only because you are so fantastic. Thank you for your loyal support!

Honestly put, we are looking forward to the day you would never EVER want to read these pages. We are looking forward to the day we can close up shop and never write another page. The reason is this: that will be the day there is a CURE for AMD. Not here yet, but strides are being made.

Bringing me to a couple of related things I want to touch upon. Remember Vision 20/20: The Right To Sight? We are just about 18 months from their target date. Their goal is to eradicate preventable blindness in the world.

Back in 2004 JAMA Ophthalmology ran a lengthy article about the state of vision in the world. At the time there were 45 million blind in the world and 80% had been blinded by diseases or conditions that were either curable or preventable. Even worse, unless something was done and done quickly, they were projecting 76 million blind by 2020. Yikes!

Anything happening? Oh, yeah…according to Healio, the FDA has recently approved a treatment for river blindness. Although I don’t think I had ever heard of it before, I would suspect it strikes terror in the hearts of mothers in sub-Saharan Africa, Yemen, and South and Central America. Let your kids play in the river and they may come home with a parasite that will make them blind. The World Health Organization has identified river blindness as the second leading infectious cause of blindness in the world. Pretty good to finally have something that will treat that.

Then there are the cataract initiatives all over the world. Recently the director of Khmer Sight Foundation spoke on the strides they have made fighting cataracts in Cambodia. Good efforts there.

You want impressive? Try the Himalayan Cataract Project. A piece on CBS News last year sang their praises. Rightfully so. The Himalayan Cataract Project had at that time restored sight to more than four million people in 24 countries. That wasn’t just the work of founders Ruit and Tabin, of course. Together they had ‘only’ restored sight to 150,000. They trained a few folks along the line.

I will be anxious to see what the World Health Organization presents in 2020. I have a feeling it is going to be big.

Keep the faith. Progress is being made on all fronts. It is amazing. Want proof? Watch the 60 Minutes video when the Nepali woman sees for the first time in decades. Amazing.

Written June 17th, 2018

Next: Focus

Home

Glad They’re On Our Side

Thank God it’s Friday, Friday, Friday! I would ‘sing’ the lyrics to you but I just looked them up and they are really rather uninspired. Good memories with the music, though. In 1978, I was a disco queen! Anyone else who had a totally enjoyable, misspent youth in the clubs? Those were the salad days.

Anyway, I am really packing tight three days a week at the counseling office. Still not enough clients for four. That means I will drive Lin crazy with many, many pages. Pray I get more work so she gets a break! [Lin/Linda: Please pray she gets more work! Pleasssseeee!]

Derek Daniel has Leber Hereditary Optic Neuropathy (LHON) and, true to form, when I learned about something, suddenly it is like Underdog. It’s everywhere. It’s everywhere!

Healio reported GenSight just announced more information on their REVERSE phase 3 clinical trial results. It turns out this clinical trial assessing the efficacy of a treatment for LHON did not meet primary endpoint goals but did meet several secondary endpoint goals.

What does that mean? eSearch tells us primary endpoints are results that will answer our most important questions for the research. Secondary endpoints are about other questions. They are not necessarily what we were trying to find out but the answers are generally kinda cool and good to know.

For example, contrast sensitivity almost doubled after treatment… Hey! We have problems with that! Maybe this treatment for LHON will have some crossover potential. Their secondary outcome measure may prove to be a boon for us.

LHON is a mitochondrial disorder with a maternal inheritance. In other words, it is a disorder of the powerhouse of the cells. (Mitochondria turn energy from food into a form that cells can use). Since the mitochondrial DNA comes to us through the maternal line only, it stands to reason the inheritance for LHON is through the maternal line.

Doesn’t sound like us; right? Stay with me. I do have something in mind.

The Healio page sent me to a 2012 journal article on Leber hereditary optic neuropathy and oxidative stress. After several paragraphs about how they produced mutant, transgender, blind mice (don’t ask me) to study the disorder, they got to what is, for me, the crux of the matter. Specifically, they are thinking miscoding in the mitochondria leads to this-then-that and then to super oxidation and then all hell breaks loose. In other words, they are thinking oxidative stress is a huge causative factor in yet one more eye condition! There is a pattern forming here.

They are reported to be experimenting with ways of reducing oxidative stress in those with LHON. There is evidence that should slow the progress of their condition.

Of course, as of 2012, they were still talking leafy greens and AREDS2, but that does not mean there will not be other ways of doing this the researchers will discover something. They have to be pretty clever; right? After all, a bunch of folks who say “Hey, let’s make a mutant, transgender, blind mouse!” and then actually do it have to be pretty smart.

Just glad they are on our side.

Written June 17th, 2018

Next: Priorities

Home

Do You Like Thai?

Greetings from Happy Valley, Nittany Lion country. If God doesn’t love Penn State, why is the sky blue and white? [Lin/Linda: FYI, blue and white are the university’s colors. Pennsylvania State University is known as Penn State University and is very highly regarded for their academics and sports programs.]

OK. ‘Nuf of the Penn State stuff. How are you? I am doing well. This is day four of a five-day conference.

I am here with four colleagues from the counseling center. We are having a good time. Doing a lot of ‘girl bonding’. We have been out for Mexican, Mongolian and Thai. Sounds extravagant but every meal I have had has not been all that much more than a Big Mac and large fries with a large drink. Four or five extra dollars is not bad for some pretty cool dining experiences. At the Mexican place he made the guacamole right at our table!

Once again, remember there are still lots of special experiences we can have with vision loss. Do you like Thai? Why not go and find out? What we remember from life, what makes us happy and gives us fresh conversation material is experience. Whom do you know who talks about his one-thousandth Big Mac? Whom do you know who listens?!?

But we are not here just to have fun….

We got three, ‘free’ books along with this training. Of course, I cannot really read them that well so I asked for the books in PDF form. They came today and I can ‘read’ them with my NaturalReader. Remember the Chafee Amendment allows for copyrighted materials to be reproduced in an alternative form for us visually impaired types. Since the conference provider had already purchased the hardcover books, they were willing to provide the PDF form for free. There are options for professional reading material for us.

So much for what I am doing, What is out there in the news?

Healio had an article outlining how this is the decade for those with inherited retinal disease. The article gave three reasons why we are in line for something big. First of all, the tools for innovations are finally in place. We have the knowledge and there are all sorts of treatment options being developed.

Remember the pricing of the gene therapy treatment we talked about? Big money returns are great motivators. Put that together with streamlined FDA approval and there are bound to be a number of companies willing to put effort into finding treatments and maybe cures.

The third reason listed was the availability of patients for the treatments. People are joining support groups and trying to find treatments for themselves. They are not anonymous and passive. They are screaming to be heard and helped.

The inherited retinal diseases the article spoke of were the rarer ones, not AMD. However, that does not mean the same scenario does not apply to us. Knowledge is building. Money can be made and I think they know where to find us!

Weird as it seems, this is the best time in history to be going blind. All sort of wonderful gains are being made. There is money to be made and drug companies are on the trails.

And now, back to the conference! One more day.

Written May 10th, 2018

Next: Old Age and Treachery

Home

News from Research

Hey, hey, how y’all doing? I did my Zumba class and half a yoga class and then walked up to the street fair to help with the Y’s demonstration class. Had a hamburger and fresh cut fries as well as an ice cream. I did mention I have a horrible diet; right? Then I waited nearly an hour for transportation. Geez.

If I did not have to walk along a busy road, I would consider walking the three or four miles it is to get home. I probably would get home faster.

Sometimes I actually consider just staying home because of the hassles with the damnable transportation. Then common sense grabs me – or I revert to my old, ornery self – and decide they are not going to break me!

Oh, forgot to mention, I begged, finagled, whatever a ride to Mom Prom tonight. I bought a ‘new’ prom gown at Sal Val. It was $7.50. Also silver high heels. $4.00. Very thrift store chic here! [Lin/Linda: if you are just joining us, the Mom Prom is a party for females over 21.  You buy a gown at the Salvation Army (Sal Val) thrift store.  And you don’t have to be a mom.]

Okay, enough of me. Let’s actually do some eye news.

One of those Healio articles from November, 2017, indicated they are now combining therapies for diabetic macular edema. They dosed people with Lucentis and then shot them with a focal laser. While they did not find any significant difference in the number of treatment required between the dose plus laser and the treat and extend groups or even differences in the visual acuity numbers of the groups, all treatments tried were effective.

So, in essence, they have started to ‘play around’ with treatments and may just find some combo treatments that give better results than singular ones. Personally, I am on two blood pressure medications. Either of them alone did not do a thing for me but together I have good control. There may be some people who will respond beautifully to the one, two punch of an anti-VEGF and laser combo just like I respond to my two, blood pressure medications. You never know.

Also in Healio last November – I did mention I got a bit behind; yes? – they reviewed trials of another anti-VEGF treatment. You wet people sure are popular with the researchers!

This new one is called brolucizumab and it is a “single chain antibody fragment VEGF inhibitor”. They were dosing every 12 weeks and the results were comparable to those obtained with Eylea. Also, side effects were less. In short, one more option for keeping your bleeds at bay. Pretty good.

And one more thing before I go, also back in November Healio ran a follow-up on a concept they reviewed in 2016. It appears about 100 people are now running around with macular hole repairs using transplanted autologous retina tissue. Cool.

Autologous means they get the tissue from the same person they are transplanting the tissue into. The tissue to be transplanted is taken from the superior peripheral retina.

Now, will the vision be as sharp? What are they doing to ensure the transplanted retina connects with the neural network? No clue. What I do know is they have started talking about using this technique to treat macular degeneration.

All told, ophthalmological research is speeding along on a number of different trajectories. Things are happening everyday and it really is the best time in history to be going blind! Hang in there.

Written April 27th, 2018

Next: From the Inbox

Home

Chocolate!

Hi, looking back into some of old eye news I have gotten. My inbox is way too full. Gotta clean it out.

Last November Healio ran an article on the HULK experiment. I am ignoring the fact that this study is being done with people with diabetic macular edema and not age-related macular degeneration. Why? Because I get a kick out of the name! We love Marvel comics.

In addition to the association with the big, green guy I also liked two other things about this study. First of all, they developed a microneedle for the trials. I know next to nothing about microneedles as a delivery system but the smaller the needle you use on me, the smaller the ouchy. This is a good thing, especially when it comes to eyeballs.

The other thing is they are delivering the treatment through the suprachoroidal space. The suprachoroidal space is looking like it may become the preferred route for the delivery of all sorts of retinal treatments, including RPE replacement.

In short, advances in the treatment of their condition may lead to advances in the treatment of our condition. Science builds on itself. This is a good thing.

And in today’s Healio they are FINALLY talking about an ‘eye diet’ I can follow. Chocolate! According to Healthline, dark chocolate is chock full of antioxidants. It is crazy nutritious. It lowers blood pressure and helps brain function as well as doing several other wonderful things.

Now, as reported in JAMA Ophthalmology (2018) they have done this experiment comparing the vision of people who have eaten a milk chocolate bar and others who have eaten a dark chocolate bar. (And exactly WHY was I not informed about this study? I would have even been in the control group. After all, it is all about science.?)

The results should have us all running out for dark chocolate. Those who got the dark chocolate bar showed improvements in visual acuity and contrast sensitivity two hours later.

Of course, they are not sure about the duration of the improvement. They are also not sure of the real world influence of the improvement. Healio did not suggest any theories about the mechanism involved. In other words, there is a lot of research that still needs to be done. Want to be a lab rat for this study? The line forms behind me!?

And on that note, I think I will wrap this one up. Curl up with the puppygirls and watch some TV on my iPad. Maybe I can find some Marvel comics movies. Do you like Spidey? He’s probably my favorite. Of course, I might be able to talk my husband into going to see the new Avengers movie over the weekend. That has ALL of the heroes in it. Do you think they have dark chocolate bars at the refreshment stand?

Written April 25th, 2018

Next: News From Research

Home

Keep Calm and Carry On

I want to get this typed and out because Lin and I both suspect people will not listen to me or Paul McCartney and let the suggestion of atrophic damage beyond the macula be.

How can you not listen to Paul? He was my favorite Beatle when I was a teenager! Remember when the Beatles were on Ed Sullivan? [Lin/Linda: of course I do – I was sitting on the floor in front of the TV loving every second of it.]

What? Pertinence to the topic? Okay. Sigh.

Found an article based on research coming out of Seoul, South Korea. The research looked at peripheral reticular pigmentary degeneration (PRPD). That is lesions on other areas of the retina as opposed to lesions only on the macula.

Primero point: the authors say three or four times this type of degeneration is rare, rare, rare. They had trouble finding enough people to make their study valid.

Point segundo: patients with degeneration of the peripheral retina are significantly older than patients who do not have it. Yes, some of you are up there but most of us don’t have to worry about the truly advanced age factor for some time.

Point three, whatever that is in Spanish [tercero]: the most common, probably contributing factors in these people were factors related to compromised circulation. That was both systemic and ocular circulation. The biggies were found to be retinal artery occlusion, ischemic (low blood flow) optic neuropathy, and a couple of other ischemias. [Click here for more about these conditions that are sometimes called ‘eye strokes’.]

One that sort of scared me was a positive correlation with high blood pressure. However, last week my pressure was 122/78! Admire it now because I cannot tell you the last time it was so beautiful.

Other factors are as follows: stroke, carotid artery stenosis, and yes, AMD.

Now don’t get your panties in a bunch just yet. The theory is, once again, there are common, underlying factors leading to these conditions. AMD does NOT cause PRPE although the same may not be said in reverse. PDPR may promote the development of AMD.

They are looking at a shared genetic risk between AMD and PDPR. There is evidence a complement factor H variant is involved in coding for a propensity for PDPR just as it is thought to code for some (all?) variants of AMD.

Choroidal ischemia is a factor in AMD as well as PDPR.

So, bottom line here: this is a very rare occurrence, especially in younger oldsters. It is related to poor circulation. Circulation tends to get worse as we get older. It is also possibly related to variants in complement factor H.

Can’t change your genes just yet at any rate. Cannot get any younger. That leaves taking care of your circulatory system. Do what you can to improve it.

As an anonymous member of the British Ministry of Information said: “Keep calm and carry on.”

Our journey is not over yet.

written October 8th, 2017 Continue reading “Keep Calm and Carry On”

Not a Total Loss

Hello. Sitting waiting to see the retinologist. I have a day of medical appointments. One is at a satellite office and the other is at the main hospital. Supposedly the hospital will provide connecting transportation. We shall see.

I had to ask to find out if this is a service they offer. If you have to go from building to building such as I am today, ask. They don’t advertise this sort of thing so we need to be proactive.

I realize most of you don’t play Panda Pop but if you do you know you can ‘win’ costumes for Mama Panda. I just won a costume and my Mama Panda now looks like a cross among the bride of Frankenstein, Tim Curry in Rocky Horror Picture Show and Sparkle Brite. Maybe a little Little Richard on the side. Bizarre.

Did any of you see Rocky Horror Picture Show in the theatre? Late 70s. They said “a toast” on the screen and you got pelted with flying slices of bread! Hard to believe that is now nostalgia.

What does this have to do with AMD? Nothing. Just some crazy observations to provide distractions.

If you don’t want to read this sort of nonsense, volunteer to write a page!

Sometime later: the van connection worked. I am now at the main hospital. Remember to ask about such services. No one volunteers the info.

Update on me: my left eye has surpassed my right eye in the race to ‘blindness’. The atrophy in my left eye is ‘advanced’.

Still won’t tell me what to expect, when it will stop. My retinologist said some people in their 90s have deterioration of the entire retina! Gulp! Not what I wanted to hear.

Some lady sat on the bench with me and apropos to very little asked me if “the shots” give me light sensitivity. Since I don’t get “shots” I had no clue. Although I just looked it up and it appears shots do cause some sensitivities. I assume photosensitivity is among them. Comments? [Lin/Linda: actually, photosensitivity is one symptom of macular degeneration. I can’t find anything that says injections can =cause= photosensitivity, but I have heard people say that an injection can make it worse.]

Again, please share. Otherwise I will just prattle on and you don’t want that!

Some more time later: I am now standing in the outpatient surgery waiting room, at the charging station. I have no business in outpatient surgery but the charging station is here! There is none in general internal medicine. Pooh.

These stations have connections for four or five different makes of devices including Apple products. Don’t be afraid to use them if you ‘run dry’ in your device. We have very legitimate uses for our devices and we need to keep them charged…even when the van comes early and you forget your own charger.

And I am adding one piece of legitimate AMD information before I close: According to Pubmed in a brand new October, 2017 release, hot off the presses as it were, dry AMD and prostate cancer are correlated. Prostate cancer can increase oxidative stress in the entire system. Androgen deprivation therapy helps to reduce the chances of AMD.

So, not a total loss of a page. Talk to you later!

written October 3rd, 2017 Continue reading “Not a Total Loss”

Be Prepared

I have decided a poor memory and poor vision leading to no driving is a bad combination. Once again what I planned to work on got left at the office. Really thought it was in my bag.

I have been roaming the house, picking things up, doing laundry and filling the dishwasher but we all know keeping house is not my shtick. (Just take a look at this place!) I did bring one file home to work on. Should do it but I have these articles on disaster and the visually impaired that I ran off, so…

Sue redux! Explain to me why I thought I had actually shut up!

Disasters – and this time I am not talking about my housekeeping – and visual impairment are another nasty combination. According to a 2007 American Public Health Association article, eye injuries are very common during and after all kinds of disasters but yet, at least ten years ago, most emergency response teams know very little about managing eye injury and other problems.

I looked for more recent articles saying they had beefed up the eye injury training for first responders in the last ten years. I found nada. That means these people could very well be scrambling to deal with stuff like penetrating eye wounds, chemical exposure and retinal detachment, not to mention infections and other such things with very little training and materials to do the job. And that means, my dears, we with our progressive vision loss condition are on our own. Not that I would not want the guy with the pierced eye ball to go ahead of me in line, mind you. Just saying, we need to expect to be very low priority.

Wisefamilyeye.com – love your logo! – did a page on preparing an eye emergency kit and putting it in your go bag. They suggest spare, impact resistant glasses. I suggest also having a copy of your eyeglass prescription. You might want to store it in drafts in your email so you can access it from anyone’s device. Wisefamilyeye.com also suggested safety goggles and sunglasses, artificial tears and saline solution (you might want to add an eye cup if you have one) and at least two weeks of prescription eye drops.

I already touched on clean-up with my mention of my bout with flood mud crud. Flood water contains EVERYTHING you can think of. Sewer plants and chemical plants cannot get out of the way so everything they contained will come to you. Safety goggles are a must. Protective clothing, such as heavy rubber gloves and thick soled boot if you can find any. And face masks. Face masks are good.

Essentially, disaster preparedness is just that: being prepared. The American Federation of the Blind put together their own checklist. Their list included having emergency numbers nearby and knowing who to call to get yourself evacuated asap. This could be either a buddy, the local authorities or, even better, both. Let people outside of your area know your predicament and that you might be coming to visit!

If you have a service animal – or any animal! – make plans for him or her as well. Reasonably sure evacuation services and shelters must take service animals. They do not have to take pets and rumor has it, many people recently refused to go to shelters rather than leave pets behind. Do not allow yourself or your animals to be in that position.

If recent events are any indication, we can expect to have more (and more?) disasters as time goes on. Be prepared.

September 30th, 2017 Continue reading “Be Prepared”

My Friend in Manila?

Happy Tuesday! Waiting for the van to go to school. Yesterday I was picked up at 6:56 to ride 9 miles and be there by 8:30. Dare I say I was not pleased? I just keep turning my mind towards acceptance (DBT alert!).

This is the way it is in my life now and I need to accept such nonsense if I am going to get where I need to go.

Today is day 61 of “your dog is dying.” We took a nearly 40 minute walk yesterday. Pretty active ‘dead’ dog. One day at a time.

I continue to monitor for information on lampalizumab. As of yesterday, September 11, all the news was still financial, but not quite as doom and gloom-ish for Hoffman-La Roche. Just sit tight on that one.

Apellis is drumming up excitement for their geographic atrophy treatment, APL-2. We talked about this before. APL-2 decreased the rate of atrophy growth 29% as compared to sham when injected monthly and 20% when injected every other month. In the second 6 months of the trial the reduction was 47% in the monthly injection group. APL-2 now appears to be the ‘show’ to watch as they go into phase 3 clinicals.

Philip Rosenfeld wrote a short blurb for healio.com. His disclosure statement said he has investments in Apellis. Either he is talking up the product, is truly sincere, or putting his money where his mouth is. In any case, Rosenfeld remarked APL-2 worked across a genetically diverse population sample. There were no stars and no non-responders.

Unfortunately, Rosenfeld also remarked that there is more of a chance of dry AMD developing into wet AMD when APL-2 is used. His opinion was it would have happened anyway in the eyes that became wet, but that will require more research.

We will keep an eye on APL-2.

10 hours later: The van came at 8:01 and had two people going to the local hospital already on it. Late for work? You could say that. Once more the shortcomings of transportation here are giving me fits.

Next, this has nothing to do with eyes but it happened to me today and I do want to mention it. I got an email from a ‘friend’ asking for a ‘favor’. Since my friend lives in Florida I was thinking it was hurricane related.

Turns out it was a scammer ‘phishing’ for money. My ‘friend’ was stuck in Manila and needed $2000. Yeah, right. I asked a couple of questions, obscure stuff that only members of the group I hung with in my 20s and 30s would know, and that was the end of the communication. Maybe my real friend was not stuck in Manila at all!

It appears many people in the world think of Americans as rich and gullible. I am definitely not the first and I try hard not to be the second. I assume it is the same for you.

If your ‘grandson’ emails or calls for ‘bail money’ from Tijuana, be sure to ask a few, HARD, identifying questions. Something that never got online. If the ‘IRS’ or the phone company or gas company or whatever calls and gives you a phone number to call with your credit card number, have someone look up the number independently and call that number to inquire.

Just another public service announcement.

Will check in again later!

written September 11th, 2017 Continue reading “My Friend in Manila?”

Drugs with Eye Side Effects

Every once in awhile I have a van ride during which I am really ‘white-knuckling’ it. Forgive me, but it is always one of the older drivers.

Those are the rides I really want to kick them out of the driver’s seat and take over myself. I believe I could do a better job!

The other week we went onto the berm on the right and crossed the double, yellow line at least once in a seven or eight mile trip. I was hoping not to get the same driver again but the next day, one guess who sat in the driveway. On this trip he started out by regaling me with a list of the near disasters he had had during the previous week. Dare I say this is NOT a way to instill confidence in your passengers?

He then went on to tell me he had discovered his medication was giving him double vision. The double yellow line was quadruple. Take your pick which one you want to stay to the right of!

The moral of the story for us could be stay away from impaired van drivers (although in truth we are often at their mercy) but right now I want to talk about drugs that affect your vision. There appears to be quite the list of medications that can really mess up your vision and some of them can actually damage your eyes.

I found a 2011 article in Review of Ophthalmology called Systemic Drugs with Ocular Side Effects. It may not be totally up to date but it seems to be a good general overview.

For example, Fosamax for osteoporosis can cause inflammation of the eye. Cyclosporine and Tacrolimus given for organ transplants can cause vision loss as a result of their effects on the sight center of the brain. Fortunately this is generally reversible. Then there is Minocycline, an acne drug, which can cause brain swelling and permanent vision loss.

So far safe? No osteoporosis or acne? How about rheumatoid arthritis? Plaquenil is a known retinal toxin with irreversible side effects. Fortunately, taken as prescribed you should have no problem but don’t overdose.

Topamax is for migraines and epilepsy. Topamax has been known to cause glaucoma.

How about pee problems? Anyone taking Flomax? There is a syndrome called floppy iris syndrome. It makes cataract surgery risks a lot higher.

Then, for you guys, there are the erectile dysfunction drugs. Viagra and Cialis both divert blood from the brain. There are all sorts of problems here. First of all there is blurred vision because this interferes with the neurotransmitters in the retina. Another problem is central serous retinopathy which is a collection of fluid in the macula.

Unfortunately the list goes on and includes blood pressure medication and over the counter herbals. There are many, many medications that you never thought would have any impact on your eyes but do.

The takeaway message for this page is tell your eye specialist everything you are taking, everything including over the counter medicines and herbal remedies. Some of your vision problems might be drug related.

written 8/29/2017 Continue reading “Drugs with Eye Side Effects”

MacTel

Finished the hands and knees – or actually hands and butt; my shorts have a wet seat to prove it! – scrubbing of my kitchen floor. One chore down!

Of course while I was down there I realized the next thing I should do is wipe down all the lower cupboard and closet doors. Things look a lot cleaner when you can’t see them.

I kept thinking “For this, I did 6 ½ years of college?”. Still had to be done. I am thinking that now, instead of doing a task when it looks like it needs it, maybe I should get a schedule. Won’t happen, but already lax housekeeping and low vision may prove to be a very nasty combination.

So now back to something a little more, shall we say, intellectual. Checked online and found some newer information being published by the Macular Degeneration Association. The one article says that AMD and telangiectasia might be caused by faulty energy metabolism in the mitochondria.

This phrase appears to be becoming popular on the lecture circuit: let us unpack that; shall we? ? Gee, did I sound professorial?

According to Kierstan Boyd, writing for the American Academy of Ophthalmology, macular telangiectasia, MacTel to it’s friends, is a macular disease causing central vision loss. In type 2, blood vessels under the macula swell and/or leak. Fluid causes the macula to swell and thicken (edema). Scar tissue forms. Type 1 is type 2 in one eye only.

Sounds similar to AMD without the RPE deaths and that divot that lets people see our choroids.

Mitochondria? Wikipedia gives us a lot of info we don’t need. The info we want is mitochondria combine oxygen and nutrients and produce ATP. ATP is a source of chemical energy for your cells. In short, your cells work and you live because of mitochondria.

Discovered from the article that retinas have more mitochondria and use more energy than any other cell in the body.

I had known eyes are energy hogs, but I did not realize they were the worst, gas-guzzlers of the body!

The findings of the study suggest there may be something wrong with the lipid (fat) sensors associated with this energy production. The sensors think they have lots of lipids stockpiled for energy production. They send out a message saying not to deliver any glucose (sugar) to burn. “Stockpiles are full. Stop all deliveries!”. The problem is, the sensors are wrong and more supplies really are needed. Energy-starved, the photoreceptor start screaming to be fed. This leads to new, inferior vessel formation and leaks leaving us with either wet AMD or MacTel.

So here we are with one more, ‘new’ eye disorder and another theory on what is going on in our poor, misbehaving eyeballs. Never heard of MacTel before, but if you have MacTel and you are reading this, welcome! It sounds as if the end results put us all in the same boat. Once again, we are on this journey together. Continue reading “MacTel”

Cataracts and AMD

Hunting around for a good topic and AMD and cataracts popped up in the search. Daddy had both and I would suspect some of you have both, too. Is there a relationship between AMD and cataracts? If so, what is it?

Turns out those are excellent questions. The experts are falling on different sides of the fence as to whether or not there may be a relationship between them.

Back in the earlier years of this century (2002) the good folks in Wisconsin, the Beaver Dam Eye Study people, again looked at their subjects after ten years had passed. Statistically, there was an indication that cataracts alone are associated with early AMD. There was also a statistical correlation between cataract surgery and late AMD.

Once again, we are looking at correlation. Correlation does not assume causality. Want a giggle over crazy correlations? Go to the website Spurious Correlations for some fun graphs. You will quickly see how just because things correlate they may not cause one another.

Anyway, like I said, they are still casting around to try to get some definitive answers on this question. The Chesapeake Watermen Study found a correlation between having cataracts and AMD but the Framingham Eye Study and some early Blue Mountain work did not.

But what about a correlation between cataract surgery and late AMD? Beaver Dam found cataract surgery before baseline (initially study measures) was associated with increased risk of late AMD. In fact, eyes that had cataract surgery were four times as likely to develop geographic atrophy and three times as likely to develop wet AMD! Holy freakin’ moley! How do you like that for being between a rock and a hard place?

Of course, like, I said, there is no certainty in any of this yet. In AREDS Report 25, Chew et al reported no correlation between cataract surgery and ARM. Hard to know who to believe.

So, what to do? No one is saying to go blind with cataract now rather than wait and go blind with AMD later. Do what you have to do to see.

FYI Blue Mountain, fortunately or unfortunately, flipped over to the significant correlation camp in reviewing results of a 2006 study. While that may not be great news for those with cataracts, Blue Mountain also shared yet another point they agree on with Beaver Dam. They discovered nonphakic eyes had a three times greater risk of developing late stage AMD as opposed to phakic eyes.

I know. I know. Don’t get your panties in a bunch.  Here is the explanation: in phakic cataract surgery, there is a small incision made in the front of the eye and the artificial lens is implanted. The natural lens is not removed. In nonphakic cataract surgery, the lens is removed.

Talk to your doctor, but as it stands now, given the choice, the phakic procedure sounds like a better choice to me. Might decrease your chances of advanced AMD.

Written August 7th, 2017

Continue reading “Cataracts and AMD”

Worldwide Warriors

Some of this is a repeat of information I shared a few months back, but a little review is not a bad thing. I know we have readers in low and middle-income countries and I started to wonder about the state of things where these readers are.

Even though most of our readers are in the US, UK and Canada, we should not ignore people just because they don’t make up large numbers; right? Right!

Found the WHO site on vision and blindness. That is as in World Health Organization and not Doctor Who, although over the years I have been partial to Tom Baker and Matt Smith. Bless the BBC. But I digress AGAIN.

The World Health Organization says there are 285 million visually impaired in the world. 39 million of that number are blind. This is two million more than a population estimate I found for Tokyo. 90% of the world’s visually impaired live in low-income settings. 82% of the people with blindness are over age 50.

To repeat, most of the vision problems in the world could be solved with glasses. That’s 43% of that 285 million or….let me get the calculator, 122,550,025 needed pairs of glasses. Unoperated cataracts come in second at 33% and glaucoma comes in third at 2%. Age-related Macular degeneration comes in down the list.

WHO is in the coordination role for fighting world blindness. Among other initiatives WHO has partnered with Lions Club International to establish a global network of 45 childhood blindness centers in 35 countries. (Actually, the number may be greater than that because the article was written in 2014).

And talking about the Lions Club, the Lions Club doesn’t just dabble in vision support, they are into it up to their own eyeballs around the world. Need a vision hospital in Nepal? Try Butwal. The Lions are there. How about the state of Telengana in India? The Sunyaet Lions have their own hospital.( I think. I need work on my knowledge of Indian geography!) Kenya? SightFirst eye hospital is in Nairobi.

The Lions have dozens and dozens of sites, most of them in developing nations. If you are in need of sight services, contact the Lions Club. The chances are good you can find help.

And once again…is there hope? Are these warriors against blindness fighting a losing battle? In order, yep and nope. The battle is being won. In the last 20 years there has been a decrease in visual impairment worldwide. This is in spite of the aging of the population. The decrease has been primarily due to efforts to eradicate infections causing blindness but other efforts have bearing fruit as well.

So, there you go. WHO and the Lions Club may not own that all around wonder tool, a sonic screwdriver like Doctor Who, but they are still managing to do great things for people with vision loss. If you are living in a developing nations, WHO and the Lions Club may represent your hope.

written July 26th, 2017

Continue reading “Worldwide Warriors”

Not Created Equal

We heard from a reader who has vitelliform macular dystrophy. I had never heard of it. Therefore you can image my surprise when I picked up an article I had downloaded last week and – guess what! – the article talked about vitelliform dystrophy! Sometimes the synchronicity in the Universe is scary.

Anyway, it appears the Universe has declared we are to learn about vitelliform dystrophy. Here we go!

I have discovered all macular diseases are not created equal. There are dozens of them and researchers are discovering more on a regular basis.

Vitelliform dystrophy may look like age-related macular degeneration and act like macular degeneration but it is not macular degeneration. (Don’t worry. We are not throwing you out of the group!)

Vitelliform dystrophy is a pattern dystrophy. They are so called because the damage tends to ‘draw’ things on the retina. For example, one manifestation of the disease looks like a butterfly (photo to the right is a fundus photograph of butterfly pattern).

Vitelliform 2 is called Best disease. This is not because it is the best disease to have nor is it because Dr. Best hijacked the disease and named it for himself. It is because the disease comes as a result of a mutation on the BEST1 gene. (Apparently that means we all have BEST genes and there are at least two of them. How about that.)

Best disease is a pattern dystrophy because – all together now! – it makes a PATTERN on your retina. The pattern is a sunny-side-up egg. The yolk is centered on the fovea.

One of the nice things about Best disease is you may never know you have it.  According to the Hereditary Ocular Disease site 7 to 9 percent of those with Best disease are asymptomatic. Others may experience vision loss but recover most of their function. A much smaller percentage may proceed to neovascularization and serious loss. Of course, the older we get the better chance we have of having some really serious problems. And by the way, children can have this one.

That is because, once again, it is genetic. Best disease is an autosomal dominant condition. That means it is on a body-forming chromosome – not the chromosome that has the x or the y and makes you a boy or a girl.  It is also dominant and can express itself whether or not its partner gene wants it to. You only need one of these babies to be in trouble.

Of course there are all sorts of things that may or will affect whether or not this gene does actually express. However, this is not a place to discuss epigenetics. Nor am I the one to explain THAT baby! Suffice it to say, you should warn everyone you are related to by blood that it has expressed in the family and they need to have regular eye exams.

Like AMD there is absolutely no treatment and no cure. (I get so tired of typing that). If you have Best disease and progress to CNV you may profit from shots.

And that, my dears, is that. Continue reading “Not Created Equal”

Cheap Entertainment

Just back from a walk with the Beastie Baby. This time I got to smell the honeysuckle and listen to the bees buzz. Spring in Central Pennsylvania. “Enjoy! Enjoy!” (Thank you to Manny Gordon for that quote!)

Lin got me another article on geographic atrophy and scotomata. I have not read it yet. I will let you know but right now I want to talk about floaters.

We had a yoga class outside in the middle of the afternoon. When I was in savasana (corpse pose or final rest in English. I like the Sanskrit much better!), I was watching my floater swim around in my eyeball. Hey, what can I say? I take my entertainment where I can find it!?

I have been told that eventually most floaters settle to the bottom and just hang out there. However, when I am in yoga and doing all sorts of poses, mine gets riled up and ‘swims’, my floater is in my right eye and looks like a mosquito larva.

Or at least, after some deliberation, that is what I decided. Cheap entertainment. Sort of like lying in the grass and deciding what the clouds look like.

Floaters are one more delightful thing we develop as we get older. The gel in our eyes – the vitreous – separates. I had a chocolate pudding analogy before. Know how pudding separates into fluid and clumps of pudding when it has been in the fridge too long? Same basic idea. The floaters are the clumps.

I have had this particular floater for years. You probably have some ‘old friends’ in your eyes as well. However, if those old friends suddenly have a lot of company from other floaters, if you get flashes, if you get a curtain-like shadow (see photo to the left) or if peripheral vision starts going dark, get to your eye doctor stat. These are signs of serious retinal damage and need to be dealt with as soon as possible.

The Mayo Clinic page on eye floaters lists a series of questions for which you might want to have answers when you go to your doctor. They also list some possible treatments for floaters. Laser surgery is used infrequently due to the serious risks involved. The other possible treatment is a vitrectomy. That is not fun and games either.

If possible, the best and safest thing to do is to just put up with the floaters. Shake your head. Watch them float. Think what they remind you of. If nothing else, they are cheap entertainment.

written April 29th, 2017

Continue reading “Cheap Entertainment”

Mr. Magoo!

Here we go with the crazy, preconceived notions again. I told you I was at my third job. First time in months but I understand. It is a major event to get me there and get me home. Anyway, a colleague there looked at me with my glasses and looked perplexed. She wanted to know where my big, thick glasses were!

Now this is an intelligent woman with advanced degrees. If she is thinking this, what are other people thinking?

Basic tutorial, just in case: corrective lenses, especially the big, thick ones, are for errors of refraction. Refractive errors occur in the front of the eye. There is a malformation of the lenses that causes the light to bend ‘wrong’ and focus either in front or behind the retina. The same thing can happen if you have an eyeball with the ‘wrong’ shape. Some eyeballs are long and ‘skinny’ and others are short and ‘fat’. In either case the light does not focus on the retina and things are out of focus.

Corrective lenses bend the light. They do it in such a way that the light will fall properly on the retina and we can see clearly.

There are two, main types of refractive errors. Myopia, or nearsightedness, makes it hard for us to see things far away. Hyperopia, or farsightedness, makes it hard for us to see close up. There are also astigmatisms. I don’t know a lot about these but I think they distort things because of imperfections in the lens. They can also be corrected with glasses.

Age-related macular degeneration, as most of our readers know, is a problem at the back of the eye. Bluntly put, our maculas are dying. Maculas are parts of the retina, located at the back of the eye. The only type of ‘corrective lenses’ that may help AMD are prisms. They relocate the image off the macula and on to a part of the peripheral retina, a part that should still be functional. [Lin/Linda: prismatic glasses don’t work for everyone with AMD. Click here for an article about them.]

So that is pretty much that. AMD is not a refractive error and is not going to be helped with ‘coke bottle bottom’ glasses. We are not all Mr. Magoo!

There are many, many different types of eye disorders. Most of them are not correctable with glasses, but the average person does not appear to know that. Once again it appears it is up to us to go out and educate people.

We are not all Mr. Magoo! Continue reading “Mr. Magoo!”

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”