Research

Not being one to be told there’s nothing I can do about something, I went back to my research. There seem to be a couple of different avenues of research. They were working on lasers to blast the drusen, aka piles of eye-poop but it looked to me like a hoarder intervention. Somebody comes in and cleans up the mess one time. Problem solved for now but not later. They would have a clean place to live but would eventually start to become messy again. The second thing I found looked more like the Merry Maids that were cleaning up regularly. However, it did not solve the problem of who is going to feed the Master photoreceptors? The third option was to essentially put the RPE Servants that were left on steroids. The live ones would work harder but would that not mean they wear out more quickly?

There’s research focused on cleaning up the ‘eye-poop’ called drusen.

There was one I liked, OCATA, originally known as Advanced Cell Therapy (ACT) , that was trying to replace RPEs. They were actually giving the little guys some help in order to save the Master photoreceptors. The way they were doing this was with stem cells.

There’s research using stem cells to replace the RPEs.

Although some people see stem cell research as cutting up dead babies, this is not the case. There are several lines of stem cells that have been derived from fertilized eggs that were never implanted. Some of these lines of stem cells are 20 years old. They have been massaged and manipulated so that there would never be the possibility that they could become functioning human beings. If they were not being used for research they would be flushed down the proverbial toilet.

Stem cells can be harvested from old fertilized eggs not dead babies.

The research that interested me–and still interests me–involves stem cells that have been developed specifically to become RPE cells. The theory is that replacing RPE cells with new ones and giving the little Servant guys some help will allow more photoreceptors to live and turn light into sight.

So where, pray tell, does one find someone to do this procedure? The problem is that this is very new research. It has worked on rats and other traditional lab animals (and you college psychology students, I am not speaking of sophomores). However, work on human subjects is just beginning. At the time of this writing, hospitals in Florida, Massachusetts, California and Pennsylvania as well as in foreign locales such as London and China have only completed phase 1 research. Phase 1 of any clinical study is the safety and tolerability portion. [Lin/Linda: it’s 2018 & some of these studies have advanced to the next phase or phases. The links before will give you current information]

Warning: there are doctors and clinics in the US that are offering costly stem cell treatments that have NOT been proven safe or effective through research.  Before you enter into any stem cell treatment, please do your homework!  Click here for an excellent article called Nine Things to Know About Stem Cell Treatments.

Click here for current research using stem cells for Macular Degeneration

Phase 1 results have been extremely promising. For those who are capable of using the web, there is a Lancet article by Schwartz and Regillo that summarizes the study. Essentially, they found the stem cells did not do anything strange or different when implanted in eyes. Preliminary data suggested that it was safe and tolerable. Even more exciting, they found positive therapeutic effects. A great number of the people who had volunteered and participated in the study showed cessation of deterioration and even improvement.

Phase 1 trials using stem cells is VERY promising.

So why not replace the photoreceptors as well as the RPEs? After all, when the RPEs die, the photoreceptors die. Would it not be reasonable to replace them both?

Unfortunately, medical science is not to this point as of yet. They have been successful in growing photoreceptors in the lab. They have been successful in implanting photoreceptors in the eyes of rats. The only problem is that these will not connect into the neural net. It’s sort of like having invented a cell phone without having a tower for it to work through. You can talk on your phone all day but the message goes nowhere.

They can grow photoreceptors in the lab, implanting them in rats but they won’t connect to the neural net.

That said, they are still working on it very diligently. Some of the literature suggests that it will be quite awhile. However, it will be coming.

If you are interested in seeing some of the studies that are being done on eyes and other medical research, I would invite you to go to the clinical trials website. It is a government website that lists all sorts of fascinating things. Many of them are looking for clients.

You will discover that there are dozens, if not more, of studies that are related to eyes. There are multiple studies related to Age-Related Macular Degeneration. So why would that be?

Someone, I am not remembering who at the moment, has launched the Audacious Goal Project. The Audacious Goal Project is aiming to eradicate blindness in the lifetime of some of you younger folks.

Click here to learn more about the Audacious Goal Challenge in Vision Research and Blindness.

Like the name says it is an audacious goal!

Why now?

And questioning again, why now? What is happening that vision is such a hot topic that we need a national program to deal with blindness?

The truth of the matter is, the pig through the population python is getting towards the end. We baby boomers from the 50s and the 60s have always presented challenges. We have always been very popular and our hot topics have been the topics of the nation. When I was a little girl, they were building elementary schools left and right. Then everything was sweet 16 and on through my lifespan. Right now, everything is security call buttons and retirement accounts. We drive the economy.

We baby boomers from the 50s and 60s have always presented challenges.

Because there are so many of us, our concerns are essential. One of our big concerns is vision. According to my research, AMD is the leading cause of blindness in the developed world. In the United States alone there are as many as 11 million people who have some form of AMD.  They are predicting there will be 22 million by 2050! 

This is going to be a massive drain on the country. When somebody suddenly realized what the numbers were going to look like, they decided they had better do something to ameliorate the problem. Thus, all the research.

Click here for more facts & figures from 2016

As many as 11 million people in the United States have some form of age-related macular degeneration. This number is expected to double to nearly 22 million by 2050.

Written in February 2016. Reviewed September 2018.

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What to Do

Unfortunately, there are very few things that can be done for dry AMD. My ophthalmologist suggested the AREDS vitamins and sunglasses. These are things that will slow down the progress of the disease but will not cure it.

AREDS stands for Age-Related Eye Disease Study. Several years ago it was discovered that certain combinations of vitamins and minerals will retard the process of deterioration. Today, there are probably a dozen different types of eye vitamins that advertise AREDS formulas. [Lin/Linda: Since we published this in February 2016, we’ve learned more about these supplements.  They aren’t for everyone & they do have risks.  Click here for my page: AREDS/AREDS2: A Guide.]

Taking your vitamins is a wise idea if you’ve got moderate AMD or wet AMD in one eye but not the other.

Wearing your sunglasses is also a wise idea. The research suggests that ultraviolet light, that is blue and purple, is very harmful to your eyes. If anyone in your family has AMD or you have been diagnosed with AMD, it is important to wear sunglasses with UV protection.

Wearing your sunglasses is a wise idea.

I was a good girl. I took my vitamins every day. I also have the most serious, rocking collection of sunglasses you have ever seen. It became a joke. Whatever color I was wearing my sunglasses match. If you were going to be given lemons, you might as well make lemonade, right?

If you were going to be given lemons, you might as well make lemonade, right?

What my sweet, wonderful ophthalmologist did not tell me was how to cure what ails me. In fact, he told me there was no cure–well, ain’t that just dandy? He did tell me that it is a slow-moving process (more on that little mess later) and that my right eye might very well hang in.

Written in February 2016. Updated 2018.

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The Science Stuff

Now comes the science stuff. Your eye has an area that takes care of the background and an area that takes care of seeing the stuff that you really want to look at. The part that does the seeing of what you really want to look at is called the macula. It is part of the retina which is the inside back layer of the eyeball. The retina converts light and images into electrical signals that are sent to the brain—light into sight.

Click on the image to get a detailed explanation of the diagram

 

The macula is made up of the photoreceptors, rods and cones, and the retinal pigmentation epithelials, RPEs for short. There are other parts of the eye, but this is Age-Related Macular Degeneration for Dummies.

 

 

I am not a physician nor a scientist.  There is quite a lot of information on the Internet if you’d like more details.

According to what I have read, the photoreceptors have the important job of turning ‘light into sight’. However, they are somewhat prima donnas and not very capable of taking care of themselves. I refer to them as the Masters. The RPEs are the Servants. Their job is to do everything for the Masters that the Masters cannot do for themselves. The Servants (RPEs) go to the store (the blood vessels in the choroid) and bring home nutrients for their Masters (the photoreceptors). They cook up a concoction of pigments and feed their Masters. They also clean up after their Masters.

The photoreceptors are the Masters, the RPEs are the Servants who feed and clean up after the Masters.

The trouble comes when the Servants/RPEs are not doing their job anymore. One of the first signs of AMD is the presence of something called drusen.  My reading very nicely indicated that these are fatty, metabolic byproducts of the photoreceptors’ job of turning light into sight. Basically, it seems to me that they are piles of poop. These piles of eye-poop suggest that the RPEs are not functioning as they should.

When the RPE Servants don’t clean up the eye-poop, it piles up & creates all kinds of problems!

As the eye-poop builds up, the environment becomes more toxic to the Masters, the photoreceptors. The Servants, the RPEs, also are not doing an extremely efficient job of feeding their Masters. As a result, both the RPEs and photoreceptors start to die. This causes the vision loss.

The Masters and the Servants die.  That’s what causes vision loss in dry MD.

Written in February 2016. Updated September 2018.

Continue reading “The Science Stuff”

In The Beginning

February 2015

I am a 61-year-young woman. Life is good. I am at the top of my career. I am active. People tell me they want to be me when they grow up.

February 2016

I am going blind. I’m terrified.

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

A call into my friendly neighborhood ophthalmologist gets me an appointment for the same day. They think it’s something serious. After several different tests, I am given a diagnosis of dry Age-Related Macular Degeneration (AMD or ARMD).

When I was in third grade, I had a button that said: “we never guess, we look it up.” In the age of the Internet and Google, this has become one of my credos. I look it up.

We never guess, we look it up.

What I find out is that Macular Degeneration (MD) is an eye condition in which the fine focus part of the eye stops working. There is actually a more complicated mechanism behind it but we will leave it at that for now. I will visit the science stuff later.

Macular Degeneration is thought to be genetic. Looking back, I realize my father had it. It also happens more to white people than other races. It happens more in women than in men. And, thus the name. happens in those of us who are over 55. Those are the static variables. (Static variable, sounds like an oxymoron to me.)

I’m in the static variables, I am guilty, guilty, guilty, guilty. Among the lifestyle choices that are factors in AMD, not so much. I have never smoked and I am in fairly good shape. The jury is out on whether or not my history of high blood pressure has anything to do with my developing the condition.

So here I am, based on the static variables, a really good candidate.

What exactly, however, was happening in those big brown eyes?

Written in February 2016; updated September 2018

To fast forward to what Sue’s life is in September 2018, read In the Beginning – Revisited


Click here to go to a short video that explains the basics about macular degeneration

Next: The Science Stuff

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