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

Happy New Year 2022!

In real time it is Christmas Eve, 2021. Next week at this time we will be ushering in a new year. 2022 will be here and 2021 will be done. Thank God.

I dare say 2021 has stunk! I have lost parts of my life I value. COVID has tried its best to demoralize me and defeat me. Come the end of March, I will have been working from home for two years. We closed the physical office the third week of March 2020. I miss my colleagues. I miss the change of scenery.

My transportation – less than desirable to begin with – has become even more unsatisfactory. We are now “allowed” to grocery shop two days a week. With no spare drivers, they turn into pumpkins at 4:00 pm. They also no longer work Saturdays. I no longer have the option of going to the gym, and the work-outs I do get are on Zoom. While I am glad to at least have those, they do leave a bit to be desired. It seems the only “legitimate” place I can go on transportation is the doctor’s office. Great fun.

While I snuck in a couple of adventures in the fall, more than local travel has been adversely effected as well. I had hoped to see more of the world before I went too terribly blind. How am I going to see the world when the pandemic has me sitting at home?

Although I could go on, I will spare you my pathetic whining. Suffice it to say, 2021 has been pretty stinky and the longer I live in these conditions, the more frustrated I get. The pandemic and pandemic restrictions, while necessary, have dimmed my normally sunny outlook. I am pretty sure many feel the same.

COVID has been limiting our lives and truncating our horizons. Or at least so it seems. And Covid is not the only debacle/ disaster of 2021. But perhaps not all is doom and gloom. Perhaps there are some areas in which we are actually being provided with even wider horizons.

Behind the scenes, in vision research, they are working hard to provide us with more options that will improve our lives as visually-impaired people. Even casual scanning of research titles show us they are continuing to make progress in such areas as gene therapy and stem cells. Recently, they approved a port delivery system (now called Susvimo) meant to significantly decrease the treatment burden for those with wet AMD who required monthly injections.

This past spring, I completed my term in the third phase of the APL-2 trials. I then moved into a long-term study of the same medication. How will this medication work for people who are on it for years? I am part of the group that will allow them to find out.

Oh, and if and when APL-2 is approved by the FDA? It will be the first treatment for dry AMD in the world. Cool.

I guess what I am saying with all of this is 2021 was a pretty horrific year. For many of us, our vision loss actually became one of the least of our worries!

Yet, with all of this nonsense happening, it appears medical research on age-related macular degeneration has barely missed a beat. Progress was made.

The more I reflect, the more I am reminded of Pandora…and no, I am not talking about music or jewelry. I am talking about that pesky, little girl who, in modern versions of the tale, could not stand to not know what was in the box. When her elders were not paying attention, Pandora opened the box and all proverbial hell broke loose. Fire, flood, pestilence, plague, war, crazy storms and famine were all released.

Pandora looked around at what she had done and was devastated. She desperately looked in the box. Maybe she could fix this? In the box, Pandora found there was still one thing left, hope.

The moral of the story for me is this: I don’t expect 2022 to magically solve all our problems. I still believe we are in for a bumpy ride. Things are out of the box. However, like Pandora, I have hope.

One of my reasons for hope is vision research. Vision research is going at a breakneck pace.

I still hope – believe – a cure for AMD will be found in my lifetime. After all, I say this is the best time in history to be going blind for a reason!

So, welcome to 2022! Fasten your seatbelt and hold on tight! …and when I find Pandora, that little lady is going into time-out!😜

Happy New Year 2021!

Here we are at the end of another year…or at least I am hoping we are at the end! 2020 has…shall we say…stunk! I mean, England had a hurricane-like thing recently. Whoever heard of England having “hurricanes”? And that is only a minor inconvenience when you compare it to a pandemic, a recession, a record number of hurricanes here, wildfires and, oh yes, a crazy political scene. Getting 2020 in the rearview mirror sounds like an enticing idea.

2020 was supposed to be our year. For obvious reasons 2020 was supposed to be the year we made great strides toward eradicating blindness. Lin has shared with you information on things like End Blindness 2020 and the World Health Organization’s initiative Vision 2020. There were supposed to be amazing things done this year! What happened?!?

Actually, amazing things have happened. Really. I would not lie to you. While we have hit a few snags, great things, amazing things have happened.

Dan Roberts compiles a yearly list of the progress being made. As some of you know, I was tapped to be a “lab rat” in the APL-2 clinical trials a few years back. I am proud to say, “my” study is the first one Roberts mentions in his list of innovations being made…ok, so I have done nothing but ride down there every month and let them put a needle in my eye, but I am still proud!

Although we were shut down for several months due to the pandemic, the delays were not that significant. Both Roberts and I are thinking APL-2 may easily become the first treatment for advanced, dry age-related macular degeneration also known as geographic atrophy. We are both also thinking this Apellis product will be on the market in late 2021.

Roberts also makes mention of other advancements. Port systems for the administration of anti-VEGF are on the near horizon. These would allow the number of eye shots to be reduced significantly in those with wet AMD.

In his summary, Roberts mentions the ever-increasing collaboration of groups and experts around the world. Building on each other’s successes really does allow us to build the proverbial better mousetrap and everything else. While Roberts is speaking of supporting organizations, I would point to the collaboration in science. Did you notice the number of immigrants represented in the development of the COVID-19 vaccines? Speaking of AMD as well as COVID-19, we are truly in this together and will make more progress when we support one another. It is a small world.

Last of all, Roberts refers to the revolutions in artificial intelligence and telecommunication, particularly Telehealth. I would add to his points that my life as a woman with visual impairment has been made much easier by the technological revolution we are experiencing. I expect it to get even better with time.

And keep in mind this is just a small fraction of what is happening in the fight against vision loss. When you look at the research you see a wide range of potential innovations. Regenerative medicine? Gene therapy? Cyborg-sounding things like miniature cameras in eyes? Yep. All being worked on. While I am thinking APL-2 will be the first treatment for dry AMD, you should have no doubt, there are other treatments in development and snapping at its heels, all anticipated to do great things.

So, yes, even given this stinky year nearly behind us, there is hope. And coming up to the fifth anniversary of my diagnosis of legal blindness, I have to say that hope for those of us with vision loss is getting stronger every year. And I assert once again, this is the best time in history to be going blind.

Best wishes for a blessed – and much better! – new year!

Written December 27th, 2020.

 

 

Catching Up – December 2020

Hi. It has been absolutely months since I wrote a page for this website. With COVID-19, my workload as a therapist has expanded. In addition to my day job, I was asked to do a side gig writing for a “health community.” Add to that my “doom scrolling” of online news outlets to check on the pandemic and election, and I have managed to let a few things slide.

As some of you know, Lin, my friend, editor, webmaster and purveyor of many good things, has had some serious health issues that are hopefully mostly behind her now. Her reasons for being m.i.a. from the website are much better than mine. [Lin/Linda here: thanks for the kind words, but we both have perfectly good reasons for not being here – they’re just different. ::smile::]

All by way of saying, sorry and making a pledge to do somewhat better. Not that we are going to present the quantity of material that we used to. Come the end of January, 2021, I will have been legally blind for FIVE years! How time flies when you are having “fun.” After that amount of time, I have adjusted. In some ways, being visually impaired has become old hat. I don’t have the angst I once had and my life is pretty routine. In other words, I can be really boring! And, yes, being visually impaired can be boring, too.

That does not mean, however, that everything is boring about my geographic atrophy. A few of you may know of my quest to some day regain my sight. Yep. Cockeyed optimist that I am, I have every intention of someday no longer being legally blind. The first step in my diabolical, master plan was to get into a clinical trial. That goal was reached about 18 months ago.

Since that time I have been going monthly for injections of a trial drug. The earlier results of the study suggested this drug, APL-2, slows down the rate of degeneration by about 30 to 40%. If things continue to progress at the rate they are now, it is not inconceivable that the first, clinically proven treatment for geographic atrophy will be on the market by 2022.

And it might not even be “my” drug that wins that race to be the first treatment for GA. The concept behind “my” drug – interfering with the complement cascade – is also the underlying concept behind other treatments in the pipeline. Those drug trials are doing very well also.

The second step of my diabolical plan was to get into a long term study that would hold me over until step three was ready. I am supposed to achieve inclusion in a long term study in the spring. The study is to determine how years of use of the drug affects my eyes. Will I develop side effects? Will the drug continue to work as well? Worse? Better?

I am willing and anxious to get into that study because it is a stepping stone to my next objective. That objective is a study that currently only exists in my feverish, little brain…and maybe the brains of a few researchers. That study will see how well transplanting RPE stem cells into eyes treated with the drug works.

After that? By that time I am speculating they will be ready to transplant photoreceptor cells and get them to connect to the optic nerve. Endgame. We see again. [Check out the Audacious Goals Initiative of the NIH NEI (National Institute of Health, National Eye Institute). That’s what they’re working toward.]

At least that is my diabolical plan. Step one will be completed and step two will start in the spring. I love it when a plan comes together.

If you are ready and able to join me and thousands of others as “lab rats”, if you are ready to become part of the solution, please volunteer for clinical trials research. Remember, this really is the best time in history to be going blind.

Written December 1st, 2020.

Retinal Repair Using Stem Cells: Part 2 – Current Status 2020

There have been stem cell trials for retinal repair going on in various locations around the world since the FDA approved their use for retinal repair research in 2010.

Warning: there are no FDA-approved stem cell trials outside of research. Why is that important? Check out the first article in this series for the details.

The Problems in Early Research

The goals of the continued clinical trials are to solve these problems:

  • There have been ethical issues with using embryonic stem cells related to religious and political disputes about when life begins.
  • Early research using embryonic stem cells found that these cells were often rejected.  That means that if they are used, the participant takes immunosuppressant drugs exposing them to other diseases. Also, early research found that sometimes these cells migrated and caused tumor growth outside the eye.
  • Stem-cell-induced RPEs injected in a suspension under the retina didn’t stay in that area to integrate with the person’s RPE cells.
  • The method of getting these stem-cell-induced RPEs into the retina through a  surgery called a vitrectomy adds to the risk of adverse effects such as retinal detachments.

I am greatly simplifying this topic because it IS complicated! If you would like a detailed review of this period of time, check out Retinal stem cell transplantation: Balancing safety and potential. It’s written using highly-technical language, but I think the conclusion is clear:

“The promise of stem cell therapy to preserve or restore vision in retinal degenerative diseases is finally taking shape. Whereas a decade ago, such ideas were confined to basic and translational laboratories, in the current era, stem cell transplantation into the retina is finally in human clinical trials in the setting of well-run registered clinical trials with the oversight of the FDA and appropriate ethical and safety review infrastructure built in. These aspects promote the protection of study subjects from undue harm, and facilitate the dissemination of the results to the scientific community and the peer review process.”

Status as of 2018

If I counted correctly, there are 18 clinical trials listed in a chart in the article Stem Cell Therapy in Retinal Disease. Sometimes they are called ‘RPE transplantation.’ They vary in:

  • location of the research: US, UK, Japan, China, and others.
  • source of the stem cells: embryonic, autologous cells which are cells taken from the participant (bone marrow, blood, skin).
  • how the stem-cell-induced RPEs are organized:
    • loose in a suspension which is a fluid or
    • on a single layer of some kind of material (monolayer) that connects them to keep them together. This simulates how normal RPEs are positioned on Bruch’s membrane. The designs and composition vary, but some other terms for this approach are patch, scaffold, layer, implant, or sheet.
  • type of delivery method: injected into the vitreous fluid or inserted below the retina using various procedures.
  • type of retinal disease: AMD both wet and dry, Stargardt’s Disease, Myopic Macular Degeneration and Glaucoma.

Status in 2020

There are 3 stem cell clinical trials that have been making headlines in late May and early June 2020.

London Project to Cure Blindness

In 2015 in a phase 1 UK clinical trial, stem-cell-derived RPEs on a patch were inserted into the retinas of 2 people who had vision loss from wet AMD. In 2018, it was reported that they had gone from not being able to read at all, even with glasses, to reading 50-80 words per minute with normal reading glasses.

A recent update said that 5 years later, these 2 people have retained this improvement. There are other people enrolled in this clinical trial. When the COVID-19 lockdown has lifted, they will be treated.

Lineage Cell Therapeutics OpRegen Clinical Trial

For those who have advanced dry AMD called geographic atrophy (GA), there are 2 issues:

  • There are areas of no vision from dead photoreceptors which are called scotomas or blind spots.
  • These scotomas continue to grow and vision loss gets worse.

In 2015, the company Lineage Cell Therapeutics started a phase 1/2a clinical trial in locations in the US and Israel using their biologic product OpRegen. OpRegen is a suspension containing human embryonic stem cells. There were 4 cohorts (groups) where the treatment varied by the severity of the GA of the participant, 1 of 2 forms of the suspension, the delivery system used, and the number of cells use. For some of the participants they used a delivery system they developed called Orbit Subretinal Delivery System which delivers the stem cells into the retina without the need for a vitrectomy.

The FDA ‘fast tracked’ the clinical trial because “the drug fills an unmet medical need in a serious condition.” That means it will get faster communication and review with the FDA (more details in ‘BioTime’s Subsidiary Cell Cure Neurosciences Ltd. Receives FDA Fast-Track Designation For OpRegen® For The Treatment Of The Dry Form Of Age-Related Macular Degeneration.’

Preliminary data for the 5 participants in cohort was presented in 2020. The findings were:

  • The stem cell product and new delivery system were safe and well tolerated in all 17 participants.
  • For 5 people, there was an average of a 10 line increased in visual acuity over the 15-month followup period.
  • Testing showed improvement of the RPE area with a reduction of the amount of drusen and a decrease in the size of the scotomas of some participants.

National Eye Institute

After positive results using animals, the National Eye Institute announced a Phase 1/2a clinical trial in which a person’s own blood will be used to create stem-cell-induced RPEs that will be transplanted into the retinas of 12 participants who have geographic atrophy. There are two important aspects of this clinical trial:

  • By using a person’s own cells, it reduces the chance that the body will reject them. That reduces the need for Immunosuppressant drugs.
  • The stem-cell-derived RPEs are put onto a single-cell (monolayer) biodegradable scaffold or patch. It’s the first clinical trial in the US to do this.

As a phase 1/2 trial, the participants will be monitored for a year for adverse events to make sure that the stem cell patch and procedure to insert it are safe. Based on the promising results of past stem cell clinical trials, they also hope to see improvements in visual acuity.

Hope for Those With Vision Loss

Vision loss from the advanced stages of any type of macular degeneration is devastating. This line of research has advanced greatly in 10 years. There have been promising results so far. Current and future research is building on those results to give HOPE that vision loss can be stopped and even reversed!!

 

Retinal Repair Using Stem Cells: Part 1 – Background

Research into macular degeneration is aimed at:

  • stopping the disease from developing
  • treating it so that the disease process stops
  • reversing damage that has been done
  • curing it

I’ve shared many examples of each of these areas. You’ll find links at the end to 4 of my articles about research for wet AMD, for dry AMD, for gene therapy research, and for a cure.

In this article, we’ll look at what’s being done in clinical trials to reversing damage and to restore vision that has been lost.

Reversing Damage That Has Been Done

What about those who have an advanced form of macular degeneration and have suffered vision loss? This can occur in any form of macular degeneration including AMD, Stargardt’s Disease, and Myopic Macular Degeneration. The stem cell research applies to all of these.

Vision loss occurs when the photoreceptors die. These cells transmit signals to the brain which is where we get our sight. They convert ‘light to sight.’ They die because the cells that keep them alive called RPEs (Retinal Pigment Epithelium) falter and die. These RPE cells are critical to the retina’s ability to dispose of waste and to make sure the photoreceptors are nourished. We know that retinal cells don’t regenerate, so researchers have been asking the questions:

Can we keep the RPE cells healthy? Can we replace RPE cells that have died? If we do that, can we restore vision that is lost?

There is research into replacing photoreceptors, but it’s more difficult to do. It is currently being explored in the lab and with animals which is called pre-clinical research. 

Restoring RPE Cells – Restoring Sight?

The answer to those questions about RPE cells have been found in the area of stem cell research. What are stem cells? They are specialized cells in our body that can make other types of cells. No other cells can do that. The stem cells used in research come from different sources. You can learn more about them in National Institute of Health’s Stem Cell Basics and A Closer Look at Stem Cells.

Here’s a very simplistic explanation as to why stem cells are of interest in retinal repair:

  • If they can make other types of cells, can they make RPE cells? The answer is yes! These new RPEs are called stem-cell-derived RPEs, and they’re created by the ‘magic’ of science (it’s complicated!) in the lab.
  • If we could take those stem-cell-induced RPEs and get them into the retina, could they replace failing or dead RPEs and keep the photoreceptors alive?

That’s exactly what researchers are working on.

Warning

The topic of using stem cells is one that has been discussed in MANY areas of healthcare. For retinal repair, there is NO proven safe and effective use of stem cells as a treatment for macular degeneration outside clinical trials which follow procedures that are rigorous and based on the scientific method. The first step is to establish the safety of the proposed treatment – that’s Phase 1. Only if the treatment is proven to be safe do the clinical trials progress to find the right dosage needed to be effective and to monitor any side effects. FDA approval comes at the end of a series of phases. You can learn more about clinical trials and why they are important by reading Treatments and Cures: Too Good to Be True? You can also find out what the FDA does and does not do related to macular degeneration.

Beware Unproven So-Called Treatments

Some people and clinics sell these unproven, not-FDA-approved stem cell treatments for macular degeneration. These costly procedures have blinded people & have not been effective for others. For more information about that, you can read FDA Warns About Stem Cell Therapies – Some patients may be vulnerable to stem cell treatments that are illegal and potentially harmful. The FDA has been working to shut down the sellers – that’s what they are – of these possibly dangerous procedures.

Unreliable Resource

The NIH National Library of Medicine has an online resource available called clinicaltrials.gov. It’s where researchers can list their studies which can be accessed by patients, their family members, health care professionals, and the public. Unfortunately, the site has no oversight, no vetting of the entries to make sure they are legitimate studies. Just because you find something that sounds interesting to you or someone you love, it doesn’t mean it is something to seriously pursue. You need to do much more research. I recommend the article Nine Things to Know About Stem Cell Treatments.

Stem Cell Research for Retinal Repair

The FDA approved their use for retinal repair in 2010. You can read about the early research in the 2018 article Stem Cell Treatment in Retinal Diseases: Recent Developments.  Also, you can watch a great 2018 video Retinal repair: Bringing stem cells into focus.

The study of using stem cells is called regenerative medicine.

The Basics

Since retinal repair research started in 2010, the studies have varied primarily in two aspects:

    1. The source of the stem cells. The options used so far are embryonic stem cells and induced pluripotent stem cells which are adult cells that are reprogrammed to look and act like embryonic stem cells. You can read about these in What Are Stem Cells and How Do They Work.  The more recent research has moved to using the induced pluripotent stem cells for several reasons: use of embryonic stem cells has raised ethical issues, they are hard for researchers to get, have a higher risk of rejection, and they can migrate to other places with a possibility of creating tumor cells.
    2. The method of transplanting the stem-cell derived RPEs. The purpose is to get these new cells in the area of the RPEs so they can be integrated with them. Initially, the cells were put into a suspension (a fluid) and injected into the retina. Unfortunately, those stem cells didn’t stay where they were placed. With the help of engineering experts, more recent research has put these cells on a monolayer (single layer) of a material to keep them together so that when they are implanted in the retina, they will stay in that area. The designs vary. Some other terms for this approach are patch, scaffold, layer, implant, or sheet.

Summary of the Concept

The basic way stem cell research is conducted is that ‘new’ RPE cells are created in the lab from stem cells and injected into the retina. Hopefully, these stem-cell-derived RPEs should then integrate with the person’s own RPE cells so that they can do what RPE cells do: nourish and clean up after photoreceptors. Sounds simple, yes? It isn’t. There are issues regarding rejection of these new cells and the safety of using immunosuppressive drugs, their possible migration to other places in the body where they may create tumors, safety of the method that delivers the stem-cell-derived RPEs, and more. That’s why the clinical trial process is so important!

The History

As I wrote above, the FDA approved the use of stem cells for retinal repair in research in 2010. Phase 1 clinical trials started that year. The purpose of phase 1 clinical trials is to make sure the treatments are safe. Since stem cell research for retinal repair was so new, researchers were very careful. These early studies used embryonic stem cells with their possible complications. One early trial was stopped out of concern for the participants

Since then, many clinical trials have been done.

When doing your own research on this topic, make sure to check the dates of the resources since much has changed since 2010.

Two early Phase 1 studies were started in 2010 by Advanced Cell Technology (then called Ocata which became Ocata Therapeutics; it’s Astrellas currently). Professor Steven Schwartz, MD, and colleagues reported that 4 months after the first patients had the procedure they found no safety issues of tumor growth or rejection from using embryonic stem cells and no loss of vision. In 2015, they reported that of the 18 patients treated, more than half had improvements in visual acuity. They found evidence that the new RPE cells were integrated in the retina. They also reported that although the treatment was safe, which meets the objective of a phase 1 clinical trial, more follow-up was needed. 

I could give you a LONG list of articles about the clinical trials that came after this one. A lot of progress was made, a lot was learned. I want to fast-forward to where we are today with this promising research.

Next: RETINAL REPAIR USING STEM CELLS: PART 2 – CURRENT STATUS 2020

More Research

A Cure in Our Lifetime?

Have Dry AMD and Wonder When There Will Be a Treatment? 

Have Wet AMD and Hoping for Something Other Than Injections?

Gene Therapy Research for AMD. Stopping the Disease

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

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Brighter Every Day

Greetings from what appears to be Pennsylvania’s version of monsoon season. Good grief. Tis wet out there!

This is going to be yet another hodge podge of unrelated ‘stuff’. Bear with me if you can.

First of all, I want to thank all of the kind people in the world and encourage you, if you are not going out because of fear of the stigma of vision loss or whatever, to get out there. Remember I told you I got left the other week? Strangers at the Y who saw that debacle are now checking on me. Do I have a ride? Be sure to say something if I get stuck again.

The clerk at a chain, sandwich restaurant gave me my change in $1s when I said I was visually impaired and needed singles for the van. 18 of them. Bless him.

Then there are my high school friends who drove 80 miles to have lunch and ‘catch up’ and the woman at Zumba who volunteered to give me a ride to Mom Prom and a dozen other people who look out for me and drive my sorry self around. Thank you!

Really. The more you get out there the better life will be. People are basically good and helpful. They will look out for you.

And in other news, I got lifetime dog licenses for the puppygirls. They offer a cut rate to the elderly and/or disabled. It should be about half of what I would have paid if I had bought licenses for the next 13 years. Saving money is a good thing. If you have younger dogs check it out.

NFB Newsline is expanding their offerings. They are now offering a children’s magazine, Stone Soup, as well as Sports Illustrated Online. These are in addition to Sporting News, Globe’s Israel and Science X, not to forget Medical Xpress and the newspaper Concord Monitor.

Remember Newsline comes to you through your phone, including landlines for people who don’t like their electronics to be ‘smart’. They offer a wide variety of local newspapers and you just may find some local news to listen to with your morning cup of coffee.

What else? Well, I found a healio.com article that talked about using immunosuppressants more frequently in Ophthalmology. This April 14, 2018 article did not mention AMD as a target condition, but given that AMD is thought to be related to immune system problems, they may want to look at the utility of immunosuppressants sometime down the line. My point in mentioning it was to show research in Ophthalmology is branching out in many different ways.

And case in point, remember the gene therapy for Leber congenital amaurosis that was developed in Philly and approved by the FDA? The really expensive one, Luxterna? The doctors at Bascom Palmer just injected Luxterna into the eye of a nine year old. His family is starting to see improved functional vision in this child. [Lin/Linda: actually, this March 23rd article says that there were 2 boys who were injected with Luxterna.]

And one more before I go: retinitis pigmentosa is a retina degeneration disease that leads eventually to total blindness. GenSight has gotten MHPRA approval to run clinical trials of gene therapy for RP in the UK. (Alphabet soup, anyone??) Why get excited about that in an AMD blog? To quote the GenSight CEO “If proven safe and effective, this therapy could be transferable from retinitis pigmentosa to dry AMD.”  [MHPRA stands for Medicines and Healthcare Regulatory Agency and is the UK’s equivalent to the US’s FDA.]

Oh! That’s a good reason! Things are looking brighter every day!

Next:  I Got This

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Children Cannot See!

First of all I have a confession: I am cranky. Thursday, transportation left me stranded. Thank God for compassionate souls with cars. Yesterday,  I had a full schedule of clients and lunch was at 4 pm. Hungry! I have a 12-hour – count them, 12! – webinar to listen to and about six reports to write. I have gotten ridiculously behind and my days don’t have enough hours.

Now, I understand I generally do this to myself. I also understand I generally am able to pull my own proverbial fat out of the fire so most people don’t worry about (or even listen to!) me. [Sorry, did you say something Sue? ::grin::] But – and that is a big but – I feel like whining and Lin showed me something to whine about!

To wit: “Breakthrough treatment may cure 50% of all cases of blindness”! What the rinky dink is that all about? It turns out the article is all about the stem cell work just published. Huh?

Okay. Age-Related Macular Degeneration is our nemesis but on the radar of the world in general, it is pretty much a blip! One blip. A little blip at that.

VisionAware reminds us that 90% of all of the 39 million folks who are blind actually live in the low-income countries of the world. Looking at our demographics, for the most part, honey, that ain’t us. Yes, AMD is the leading cause of blindness in the developed world, but if you live in dozens of other places, you may not keep your sight long enough to even think about the possibility of developing AMD.

In 2017 the World Health Organization (Who? The World Health Organization. WHO? That’s right. What? No, WHO…with apologies to Abbott and Costello.?) estimated there are 1.4 million children worldwide with irreversible blindness. There are 19 million children in this world with vision impairment. Of those, 12 million have refractive errors. In other words, we could cure 12 million cases of childhood visual impairment with glasses!

Un-operated cataracts are the major cause of blindness worldwide with a 35% share of the pie. Please note that word is un-operated not inoperable. These people could be made to see with a simple operation.

Uncorrected refractive errors come in in second place with a 21% share of the pie. Add 35% and 21% and you already have 56% of the causes of blindness, immediately putting to lie the 50% “cure” claim of that nutty headline.

So, worldwide, how much moderate-to-severe vision loss is due to age-related macular degeneration? About 8%. Please note the words did not say blindness. They said moderate-to-severe vision loss.  There is a big difference.

Do I like being visually impaired? Not by a long shot! Do I want a cure? Uhh, yeah. But do I want to feel sorry for myself and swallow every crazy headline that gets published. No!

The treatments and eventually the cures are coming, but they are not here yet. A little skepticism about some of the claims out there now is a good thing.

And, the truth of the matter is, most of us – yes, us with AMD – are pretty dang lucky. Our impairment has hit us late in life. I became myopic at age 12.  What would my life have been like if my parents could not have gotten me glasses?  How much human potential are we wasting because CHILDREN cannot see?

Think about it.

Written March 24th, 2018


Next: Overwhelmed – Again

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Considerations in Evaluating Recent Stem Cell Clinical Trial in the UK

I hope that you know that I am NOT trying to say that the results of this study are not valid or not hopeful.  Not at all!  It’s a great first step but Sue and I and others believe that this treatment won’t be available in 5 years as is being claimed. There is still too much yet to do.

Here are some considerations that we’ve found:

1.  This is not a ‘cure’, the person’s vision was not restored to the before-AMD state and this will not help everyone.   If a person’s photoreceptors have been damaged, inserting RPEs will not restore vision which is what the photoreceptors do. RPE cells ‘help’ the photoreceptors function. This is for those people who have some functional photoreceptors with RPEs that can be restored or rejuvenated.

2.  The scientific article was received by the Nature Biotechnology publishers on November 6th, 2016 (yes, 2016!), accepted on February 28th 2018, and published online March 19th, 2018.  This journal is peer-reviewed so it’s highly likely that the delay was because they had questions, asked the authors to explain what they did and how they did something.

3.  There were 10 people enrolled and only 2 people got the treatment (stem cells).  They can say they have 100% success but what about the others? I read that they said they would be treating another participant but no mention of timeline.  Just this morning I saw a video that said that 8 more patients will undergo the procedure but there’s no timeline.

4.  The Pfizer company was the sole funding source when the clinical trial started.  When 2 of the 10 participants were enrolled, Pfizer suspended funding for ‘strategic commercial reasons’ not related to the trial.  We are not sure where the funding will be coming for future research.

5.  This is a really early phase of clinical trials.  Phase I is the first of the phases.  Its purpose is to make sure they’ve got the proper dose and to see if there is any ‘hint’ that it works.  Phase II is the preliminary safety, final dose finding and looking at the results according to ‘endpoints’ they set at the start.  Phase III is where they really prove if it worked and to make sure it is safe.

6.  Before this can be used on the public, it will have to pass through regulators.  Consider the phase & this aspect, it’s hard to believe that it could be available in 5 years.

7.  They’ve only observed these 2 people for 12 months.  They will be followed for 5 years. One thing that can happen with stem cells is that they can migrate to other locations and grow tumors or they can be rejected..  That’s why they give immunosuppresant drugs after surgery. It this case it was prednisone delivered directly to the eye. There’s no information about the long-term use of it. The woman who was treated is diabetic and the prednisone caused a change in her blood sugar (they were able to adjust it).

8.  The purpose is to insert a ‘patch’ of RPEs generated from stem cells.  It won’t replace all RPEs. It definitely won’t replace photoreceptors that give us sight.

9.  There is no sham surgery done so you can’t 100% say that it was the stem cells that improved their vision.  Sham surgery would be the researchers using the surgical technique exactly as the treatment technique but without the RPEs.

Yes, we will follow this and report anything we find to you.

Written 3/23/2018

Things Are Getting Better

Just about time to get ready for bed but I thought I would start this while I was thinking about it. Point one: Sunday I went in and activated the educator’s discount on my phone plan. I kept forgetting about it before, which was stupid. I will save 15%, which will be about $27 a month.

Lots of companies and professions have discounts for a variety of things. If your employer or former employer does not have discount arrangements, consider joining AARP or another such organization. AARP is about $12 a year, for which you get a list, as long as your arm, of business offering discounts. For example, Cirque du Soleil tickets in Vegas go for about a hundred dollars, (or much more!) a piece. Buy two with AARP’s 20% discount and you have more than recovered twice your membership cost. (And, yes, they have phone plans, but I got all excited when I saw Cirque.)

That is the memo from my thrifty side. Now we can hear from my practical side.

My practical side says invest in power strips. We have a substitute cleaning person at the office. She unplugs my extension cord every time she cleans! Ahhhhhh!!!!!! That means I have to crawl around the furniture trying to get everything reconnected so I can plug in my CCTV. I will assume you have tried to plug something into an outlet in a dark corner before. With limited vision it is an exercise in frustration.

The answer is power strips! Plug those babies in one time. After that you can pick them up out of those dark, dreary corners and hold them in the light so you can see what you are doing. A thousand times easier to plug in my CCTV.

What else? Well, have you seen the research suggesting baby boomers have less AMD than their parents? And those who are coming after us – we who were born between 1946 and 1964 – seem to have even less.

Of course, it is sort of hard to prove by me with GA (geographic atrophy) in both eyes but supposedly the risk of developing AMD has been decreasing by 60% every generation. Seriously. Cross my heart and hope to die. Science Daily says they got the information from the JAMA Research Journals. JAMA apparently got it from Beaver Dam. [Lin/Linda here: The Beaver Dam Eye Study is a often-quoted research project funded by the National Eye Institute.  The purpose of the study was “to collect information on the prevalence and incidence of age-related cataract, macular degeneration and diabetic retinopathy, which are all common eye diseases causing loss of vision in an aging population.” ]

This does not mean there are fewer of us. There are many more of us. This is because our generation is so freakin’ BiG a smaller portion of us still gives us the bigger numbers. Got it?

There are articles on the web suggesting this is not just happening in the States. The proportions are going down in Europe and in Australia, too.

Why is right now just speculation. The folks who wrote the JAMA article suggested we just may be healthier. Rates of cardiovascular disease and dementia are also down.

Same underlying factors? Different ones? No clue at this point. However, the take home message is this: things are getting better. Keep exercising your good health habits. Encourage your kids in good health habits. We may have no clue what we are doing, but keep doing it!?

Written March 10th, 2018 Continue reading “Things Are Getting Better”

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!”

News Briefs

Dreary Saturday. It is cold and rainy. The chill gets into my very core. I would rather have a foot of snow than this stuff but then no one ever asks me. Also, a lot of people really don’t appreciate my preference for snow! Obviously not skiers.

All afternoon I have been curled up on the couch with my iPad. Decadent. Really don’t like to do this but I wanted to finish a BARD book I had started and I was working on level 1005 on Panda Pop. Make that STILL working on level 1005. Not going so well.

Anyway, I do need to mend my wanton ways…later.

My email is full of news briefs from eye sites. ? There is a ton of information out there. One article healio.com sent me was Specific gene variants play role in response to Anti-VEGF treatment. Once more it appears our genes are our destiny, at least for now.

We all know medicine is headed towards ‘personalization’. There is evidence for a vitamin supplement/genotype interaction and now it appears there may be an interaction between your ‘eye shots’ and your genotype. A study in Spain grouped together good responders and poor responders to ranibizumab (Lucentis). Then they did genetic testing on the two groups. Guess what. Genetically these two groups were significantly different. The genes that responded well were thought to be CFB, VEGFA and VEGFR1. Poor respondents had certain variants of SERPINF1 and CFH.

Among the non-genetic markers? Smoking and high blood pressure were both associated with poor outcomes.

In coming years it should be interesting to see what is going to happen between genetic testing and privacy rights. Also with genetic testing and attempts to withhold services. Will you have to pay more for insurance if you have ‘bad’ genes? Thinking I may be glad if I miss THAT aspect of our brave new world.

Healio.com also reported the Argus II was recently implanted in the eye of a man with retinitis pigmentosa in Singapore. Remember RP people are generally ‘big B’ blind. This thing is not for us who have comparatively good vision.

And for our friends with RP here in the States, Medicare will now pay for the Argus II in 28 states, two territories and DC. Recognition of such innovations as ‘medically necessary’ is paving the way for other innovations that will be coming. Read, accepting the Argus II for RP patients will ‘soften up’ policy makers so they are more likely to pay for things we as AMD patients will be able to use. I find that a lovely thought. (So I am manipulative, conniving and self-centered. Wanna make something of it?)

Pretty much it for now. I have not done much today and I am feeling like a bit of a waste of space. Need to accomplish something. Maybe just one more shot at that level in Panda Pop? ?

Written February 24th, 2018 Continue reading “News Briefs”

Cool Things

Greeting! I decided to stay home today. Too much to do. So instead of doing housework or work work I am working on a page.? Hey, makes sense to me!

I was doing a little web browsing and came upon the site for the “American Association of Ophthalmology. Protecting Sight. Empowering Lives”. Nice motto. Established 1896. Fairly old for ‘the colonies’.

I was looking through the sight site ? and discovered the pages from the annual meeting in New Orleans. There, in living color, was my doc! Carl Regillo was program co-director for the retina section. How about that?

Ever play Six Degrees of Kevin Bacon? It is a silly game based on the theory of six degrees of separation. The theory is anyone can get to anyone else in six moves or less through associations. I used to be able to get to the president in four moves. I was friends with the father of the secretary of the state department of agriculture. He knew the federal secretary of agriculture. The federal head knew the president. The president was my fourth jump. Done in four moves!

Anyway, started to think how many moves it would take to certain people through Regillo. He cuts it down considerably! But that is not my point…

My point is: they are doing some cool things in ophthalmology!

For example? Well, do you remember I said it would not be long before they are using gene therapy with AMD? Boy, was I behind the curve! Things in that field are happening now!

The AAO stuff was in abstract form and pretty scientific. Allow me to go to the popular press and get my info? If I sit down and try to analyze the other stuff, that is all I will get done today!

BrightFocus and WebRN both ran pages on gene therapy for macular degeneration. The BrightFocus article highlighted a gene therapy called Retinostat. Retinostat is for wet AMD. It sounds as if the inserted gene programs the cells in the eye to produce anti-VEGF. Sort of like refitting a factory to produce a different product.

Retinostat is nct01678872 at clinicaltrials.gov. What is listed is a phase 1 study (safety and tolerability) and they are recruiting by invitation only.

The second wet AMD gene therapy possibility mentioned in BrightFocus is AAV-sFLT. This is also supposed to block VEGF. This study is nct01024998. It is active but not recruiting. That is also phase 1. At the end of the first year, gene alterations from AAV-sFLT were still blocking the production of VEGF. Bottom line may be fewer or even no shots!

And, as for usual, wet AMD advances seem to happen first and our third potential gene therapy is also for ‘youse guys’. Specifically it is REGENXBIO’s RGX-314. The number is nct03066258. It is phase 1 – once again – safety and tolerability and absolutely no promises. They are recruiting. Santa Barbara, Baltimore, Boston, Philadelphia, Memphis and Houston.

So, yes. There is progress there in gene therapy for wet AMD, too. Gene therapy is in its infancy and some people object. It is up to you to decide for yourself if you believe manipulating the very code that makes up who we are is moral or are we playing God. Not my call. If you are alright with it, they could have it for you in a few years. Good luck!

Written January 28th, 2018

Continue reading “Cool Things”

Before I Go

Waiting a bit before I bathe and get clean clothes on to start the trip. Hate to start out in half dirty duds. Not to mention a half dirty me!

Just got another phishing email. Jeez. I never even knew I had an account in that bank! And to top it off, their noun/verb agreement was wrong. Grammar and usage as fraud detection. One more reason to pay attention in language arts.

Moving on…

Living Well With Low Vision had a recent post on subretinal implants for dry AMD. We are back to Steve Austin again. Remember the Bionic Man? “We can rebuild him? We have the technology?” Yep. Now we are featuring the Bionic Senior Citizen.

We have talked about the Argus 2. That doesn’t appear as if it is ‘for us’ just yet because the quality of the image is poor. Sort of falls under the heading “something is better than nothing”. If you got nothing, it is great. Those of us who visually “got something” might be best to wait some on that.

The new one is called PRIMA by Pixium Vision and it is being developed by the French. Now we are talking early days on this. Just coming out of animal trials so don’t get too excited just yet.

PRIMA is a tiny, wireless subretinal implant that could speed prosthetic vision up to the speed of video. The French team, according to Pixium Vision CEO Khalid Ishaque, built on a concept that initially came from a team at Stanford. Real cross cultural and multinational initiative. Probably a political statement there but I won’t get into that.

PRIMA goes into phase 1 trials sometime in the next couple of months in France. They are starting with five patients with advanced geographic atrophy.

Concurrently, Pixium Vision is petitioning the FDA to try to get U.S. feasibility studies up and running. That could take a while but it is in the works. U.K.? Sorry guys. No clue. Anyone know the reciprocity laws between France and Great Britain when it comes to medical technology and research?

Adding one more, short article review here. They are also experimenting with using lasers to ‘zap’ floaters. The laser they are using is the YAG laser. Neodymium-doped yttrium aluminum garnet is a crystal. Just in case you wanted to know. No? OK. I won’t go into that.

While this type of laser has had multiple uses in ophthalmology up to this point, they are just beginning to use it to play Asteroid Blaster with floaters. Comments published in the Medscape article suggest great care be taken in using YAG lasers for this purpose. More and better organized clinical trials are needed.

That is pretty much it for now. I will be ‘WiFi enabled’ for two more days. After that, I will be shipboard. Online time is obscenely expensive at sea so I will actually have to shut up for awhile. Do you think I can stand it?  [Lin/Linda: anyone want to bet on this? ::grin::]

Written October 29th, 2017 Continue reading “Before I Go”

Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

Continue reading “Research: Dry & Wet AMD”

The Winner Is…Genetics!

I just tried to read the article listing the different genetic variants that have been associated with AMD. The complementary system in Age-Related Macular Degeneration: A review of rare genetic variants and implications for personalized treatment is declared the winner!

I admit defeat! Maybe I can study genetics for a decade and come back for a rematch.

I can sum up what I learned in about two sentences. The great majority of SNPs associated with AMD appear to be on chromosome 1 where the complement immune system is coded. SNPs cluster around the location of Complement Factor H although there are also large numbers of mistakes in the neighborhoods of Complement Factors i,2,3,9 and B.

The second thing I learned is this: the rare forms of AMD are coded for in other places. These ‘outliers’ are being studied in genetically-isolated groups such as the Amish.

Side note: The Amish are a closed, religious and cultural sect. Pennsylvania is a population center for the Amish. Therefore, here in Pennsylvania they live in association with us although not necessarily among us.

The Amish have all descended from an initial group of about 200 families. Because of the close inbreeding they suffer from a variety of genetically based problems such as dwarfism, Angelman’s Syndrome and several metabolic disorders. Being such a ‘natural laboratory’ for study of the founder effect, the Amish have allowed much genetic testing on members of their community. One of the conditions studied? Age-Related Macular Degeneration.

For more information on the Amish, check Wikipedia or your favorite reference.

OK, so it is not strictly info on AMD, but man does not live by vision loss news alone. I find that sort of stuff interesting. Hope you do, too.

And quickly back to the AMD stuff – because I only have about 200 words left – the Audacious Goals Initiative is still working hard to stamp out blindness. I found a better article on the mouse-zebrafish experiments on their page at the National Eye Institute. This article stressed how the Muller glia cells from the zebrafish had been able to be transformed so beautifully they were electrophysiological indistinguishable from interneurons cells. They had integrated well on both ends of the connection required and were sending signals to the brain. In other words, the zebrafish cells had changed and connected so the blind mice could now see.

Very preliminary work but exciting. The article cites a lot of problems such as: there are not quite enough zebrafish eyes to satisfy the demands of potential research. It might be best to find ways of coaxing regeneration of existing cells in our own eyes. Save the zebrafish!; you understand.

Just one more amazing bit of research and discovery that some day will eliminate Age-Related Macular Degeneration and allow people to see….I’m just glad there are people out there who are a helluva lot smarter than I am to do the research. Now, anyone want to explain the genetics to me?

written August 27th, 2017

Continue reading “The Winner Is…Genetics!”

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”

Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence.  It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

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:

Not Your Parents’ AMD

3 pm Monday and so far it is a good day. The pool guy is working on my new liner. The funny thingee on my tummy is a normal, benign growth and the transportation company got new vans with fancy logos painted on them. No more confusion with two dozen, white vans. Life is looking up!

Lin told me there was a conversation thread in the Facebook group about parents who struggled with AMD. People remember what their mothers and fathers went through and they are determined not to become like them.

I am reasonably sure my father’s vision problems were AMD. The more I think about it his father’s vision problems may have been AMD. I remember both of them using a handheld lens to read the newspaper as well as the really strange interpretations Daddy would have when it came to TV shows. I have no idea what HE was watching but it was not the same thing I was watching!

I have said it a couple of dozen times and I will say it again: this is the best time in the history of the human race to be losing our sight. Absolutely the best. You may not realize it. You may remember what you saw and think we are doomed to go there too but we are not. We really are not.

I tried a handheld magnifier for a couple of weeks. Not doing that again. They are very inefficient. I have my CCTV, my handheld reader and my iPad which can go in the Justand.

[Lin:Linda: To see what Sue uses on a daily basis, check out these pages: A Day in the Life and A Day in the Life:Work Day.]

I can get newspapers on my phone and books from BARD (there are other sources, too, as well as magazines which are available).  I’m able to take a picture of pretty much any text I want and my KNFB Reader will read it to me. The zoom feature on my iPad will allow me to read email and research pretty efficiently. ZoomText allows me to work. (refer to the “Day in the Life” pages above)

If I want to look at something a little distance away I can use my max TV glasses or my monocular. Not too bad.

Depending upon when Lin publishes this page, you either have or will be hearing about audio description services (coming soon!). If my father had had those for the TV we would have been “on the same page” a lot more than we were when we watched programs together. Audio description can also allow you to go to the movies and live theater and actually know what is going on.

Do I want to be losing my sight? Hell, no! This is not a walk in the park but it is not what Daddy endured either. Just the same he made it into his mid 80s and managed to take care of himself until other issues brought him down. If he could do it without all of the toys, I can do it.  [Lin/Linda: My dad had geographic atrophy & took care of my mother who had Alzheimer’s using several different handheld magnifiers & a few other low vision aids.]

Yet another reason to be optimistic is all of the exciting research happening. We are poised for a veritable explosion of treatments. Not cures, mind you, but treatments. Thirty years ago there was nothing.

[Lin/Linda: To see what’s in the research pipeline, click here.]

What can you do? Be willing. Use what has been provided. If you put that iPad your son gave you in the drawer you have absolutely no grounds for complains. Bluntly put? Your extra suffering will be your own damn fault.

What else? Volunteer. Sign up for clinical trials. Join support groups. Share your knowledge and skills.

Life – and this vision loss bit included – is the craziest thing you will ever experience and none of us get out alive. Make the most of it while you can.

Continue reading “Not Your Parents’ AMD”

Caveat Emptor

So we have come to the middle of another week. Hump day, Wednesday!

I looked up funny hump day jokes and found a slew. You can take your pick. Some of them are giggle-out-loud quality.

Anyway, I taught today and then went over to the sight loss support group. My low vision person was presenting the latest in low vision technology, the MoJo monocular.

Mojo monocular

I cannot give you much of a spiel on it. I have not done much more than glance through it and pass it on. Therefore, as usual, this is just me telling you what I read. No recommendation.

The MoJo is a magnifier that works both near and far point. The price for the handheld monocular itself is about $1500. Add the part that can turn it into a CCTV and you are looking at $3000 or so. The manufacturer, Enhanced Vision, advertises a large field of view and autofocus capabilities.

This may be a great addition to the list of low vision tools. May not be. The MoJo has only been on the market for two or three months. If you are interested and have the money, try it and give us a product review.

And continuing in the interested and have the money vein, I have started to see articles suggesting that, in spite of its celebrity endorsements in the UK, the Eyemax Mono may still have some bugs to work out. The Daily Mail reported the Macular Society is suggesting caution before you agree to undergo this expensive procedure. The cost being quoted is £15,000 which at present exchange rates is approximately $19,480 (May 2017). Ouch. And if you are an American, remember the Eyemax Mono is not FDA approved and added to that cost would be a trip across the pond.

In short, it sounds promising, but remember caveat emptor. Use extreme caution before committing to any new procedure. Do your homework. Nothing is ever as good as it sounds at first blush.

The newest implant this side of the pond is a miniature telescope. This one is FDA approved so it should be both effective and safe. The manufacturer is VisionCare.  The surgery is Medicare eligible according to the article so we are not talking about huge out of pocket costs. That is a plus.

Now, once more, on the minus side, this is not a cure and will not halt the progression of the disease. All it is is magnification and a spreading of the image to intact parts of the retina. They have moved the magnification system from the outside in.

They also will only do the implant in one eye. That is because there is a ‘tunnel effect’ in the vision of the treated eye. The untreated eye is used for peripheral vision.

Another problem with the telescope is the need to train the brain. There is a period of several weeks during which the patient is learning to adapt to a new way of seeing.

Bottom line, things are progressing but not necessarily in the areas of treatment or cure. All three of these things mentioned magnify and move the image to intact retina. Close, but no cigar.

My personal preference is to find something medical that will stop the disease progression in it’s tracks. Barring that, magnification and relocating the image may bring you an undetermined period of better sight. You pay your money and you take your choice….just do it wisely.

May 10th, 2017 Continue reading “Caveat Emptor”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

Avoidable Blindness

I still get National Geographic even if I don’t read it cover to cover like I used to. I mean to get back to it – I really do; I love it! – but CCTV lights shining on glossy pages are a bit much. However, when my husband handed me a pile of old Nat Geos (National Geographics) and I saw the cover of September, 2016, I had to read at least one article. The title was The End of Blindness: Winning the Fight to See.

My first thought was “We have made the big time!” Cover of Nat Geo is absolutely the big time in my book. Then I thought “Everything they are saying about the incredible research and the discoveries made really is true.” Nat Geo for me is sort of like Walter Cronkite; if they say it, it is true.

The article has some scary statistics: 39 million people are not able to see, as in no functional vision at all. 246 million have reduced vision. That is rather a lot of people.

The article went on and talked about the research that is occurring. It talked about genetic engineering and stem cells. They also mentioned two different types of ‘bionic eyes’.

In addition, it mentioned that Sanford Greenberg has pledged $3 million in gold to the person who contributes the most to ending blindness by his end date, 2020, of course! (Better get busy on your cure projects!) The Audacious Goal Initiative continues going strong, handing out money to worthy research projects. People are putting their money where their mouths are and getting behind this campaign.

Eliminate all blindness by 2020? Great goal, but probably not attainable. Curing avoidable blindness might be possible. Avoidable blindness?

AMD is my condition and my passion. I am doing well but I would do a heck of a lot better if someone found a cure for this stuff. Problem is, according to Nat Geo, AMD is a piddly 1% of the total picture! It is important to you and me but it barely makes a blip on the world radar.

If our condition is so insignificant in the big picture, what is significant? Refraction errors. That is 43% of the problem. Nearly half of the vision problems of the human race could be cured by giving people glasses.

Guess that means we all get to dig in drawers and find our old spectacles. Call your local Lions Club to find the nearest collection box. Or better yet, Walmart Optical is supposed to collect them. Drop them off the next time you go shopping. Better they are helping someone to see than sitting in a drawer for the next decade or two.

And if you really want to get rid of more sight problems, try cataracts at 33%. In the developing world people with cataracts get to go blind. No one to do the operations is part of the problem. Nat Geo says Niger has 18 million people and 7 ophthalmologists! The other problem is funding. Subsistence farming does not allow one to pay for medical specialists.

One last plug and I am out of here. Nat Geo mentions a worthy charity: SEE International. Stands for Surgical Eye Expeditions. They provide cataract surgeries free of charge.

Done here. Bed time! Night! Continue reading “Avoidable Blindness”

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