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

Myopic Macular Degeneration: Understanding the Basics

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

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

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

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

Understanding the Key Terminology of Myopic Macular Degeneration

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

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

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

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

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

Causes and Prevalence of Myopic Macular Degeneration

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

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

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

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

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

Treatment for Myopic Chorioretinal Neovascularization (Myopic CNV)

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

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

Key Takeaways

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

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

About the Author

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

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

Article published Feb. 25th, 2023.

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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!😜

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.

Happy New Year 2019!

2019. Ready or not, it is here.

Not to make anyone feel old, but 2019 will be the 50th anniversary of Woodstock. (And October, 2020, Janis Joplin will have been dead 50 years. I still hear her on the radio almost weekly). 2019 is also the 50th anniversary of the first moon landing. How many of you could have predicted those things at the start of 1969?

Prognostication is a tricky business. Just ask meteorologists. (Which brings up another subject: does anyone else find 60 degree weather at Christmas to be scary? Lin/Linda: not if you live where it’s usually 60 degrees or higher at Christmas! ::grin::) However, with help – a lot of help! – from BrightFocus Foundation website (October, 2018), I will try to predict what we with Age-Related Macular Degeneration might have to look forward to in this new year.

Looking at the wet side of things first, now that they have proven treatments for neovascular, Age-Related Macular Degeneration, it is time to expand, refine and improve. New angiogenesis inhibitors – in other words, drugs that will retard the growth of extra blood vessels – are either on the market or will be coming soon. Some of the ones already on the market are Eyelea, Lucentis, Macugen, and Avastin.

In development are new, longer lasting anti-VEGF compounds. These things include Abicipar and Brolucizumab. Several of the ones currently on the market are also coming out in longer lasting formulas.

And let us not forget the new delivery systems in development. We reported on several different medication reservoirs that will allow patients to go two or three months without having to go in for a fill-up. Down the road, combination therapies, such as filling reservoirs with long acting medications, may allow people to go for shots every six to eight months if not longer.

Moving to the dry side of the street, things are starting to move on several fronts. My personal favorite is regenerative medicine, aka stem cell replacement/regrowth. We have spoken of the groundbreaking work being done with “the patch”. While I found nothing published about this since the spring, I cannot believe the research is not going on fast and furious. There are also studies being done in retinal pigment epithelial replacement by other companies. A search for Age-Related Macular Degeneration + stem cells yielded 34 hits on clinicaltrials.gov. Many of these are phase 1 studies. At least a few of them should progress to the next level.

Since there is a fair amount of evidence AMD has a lot to do with the function of the immune system, there are continuing efforts to intervene in the complement cascade. While lampalizumab fell short in phase 3 trials, APL-2 is entering phase 3 trials and looks promising. This medication is reported to intervene higher in the cascade process and is hoped to effect a wider range of patients.

And I haven’t even touched upon gene therapy or statin treatments or some of the most recent research in mitochondrial metabolism and AMD! All of these lines of study are showing some progress and may lead to finding a treatment and possibly even a cure.

Which study will break to the front of the pack? I have no clue. But one thing I do know is there will be progress made.

So back to Neil Armstrong from the Sea of Tranquility, 1969 “It is a great honor and privilege for us to be here representing not only the United States but men of peace of all nations, and with interest and the curiosity and with the vision for the future…”

May we, of all nations, patients and researchers alike, with interest, curiosity, and vision, continue to support one another in our quest for a cure for our shared nemesis, vision loss.

Happy 2019!

Written December 28th, 2018

Next: A MINOR EPIPHANY

“Wrap Up” Blindness in our Lifetime!

Money! Money, money, money, money…MONEY! (O’Jays- 1973). Healio reported the University of California at San Diego has been given a $50 million dollar grant to found a research center specializing in ophthalmological research. The areas focused on will be glaucoma blindness and retinal degeneration. They are hoping the new center will speed the pace of discovery and innovation. The philanthropist was Andrew Viterbi.

Also in Healio, it was announced Wills Eye has received a $5 million grant to establish the Vickie and Jack Farber Research Center at the hospital. This $5 million from the Farbers comes on the heels of a previous $2 million gift. It also follows up a large grant for the establishment of the Vickie and Jack Farber Institute for Neuroscience at Thomas Jefferson University. The target of future research is to be neurological and eye diseases.

And want to know something crazy? Jack Farber’s corporation has roots in this area, North Central Pennsylvania! If you have ever bought ribbon from Berwick Offray (world’s largest manufacturer of decorative ribbons and bows according to Wiki) or seasonal decorations from Paper Magic, you have contributed to these philanthropic gifts. Cool.

Apparently, the take-home message here is keep wrapping those gifts…lots of ribbons! Let’s “wrap up” blindness in our lifetimes! (Ouch!)

Unfortunately, I am not a multimillionaire, so I guess I have to make my contributions to the cause smaller…a lot smaller. Like prattling along on this page, for example.

Saturday I went whitewater rafting for the first time since I lost my central vision. Now whitewater rafting is not really high on the lists of a lot of people, but I love being on the water and this was one of the things I wanted to do to get back to “me.”

I found a local group of people young enough to be my grandchildren, (if I had any) and I went along with them. Everything went swimmingly – no pun intended and no, I did not fall in. The welcome I got was great. They even suggested I come along caving in December…uh, no, thanks.

Going with them was a tad unorthodox, but sometimes you simply have to do what works. Effectively, that is.

You want to know my biggest challenge all day? Engaging the zipper on my life jacket! It made me realize jacket and coat weather is right around the corner for us here in the northern hemisphere. And I am woefully unprepared.

I looked online for some great wisdom about relearning how to engage zippers after sight loss and I did not find much. The advice they give is the same advice you gave your preschoolers: practice, practice, practice.

So, today’s suggestion is to check your winter coats and see if they have buttons or zippers. You might be a bit better off with buttons (maybe. I misbuttoned a blouse the other day). If you have zippers, now is the time to practice. Asking strangers to help dress you can be a bit humiliating….it was a good thing the girl fitting life jackets was very nice.?

Written September 5th, 2018

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No Train for Christmas

Hi! Server is down again. This does not bode well. I have two hours I could be working, but I guess I bother you folks again.

Like I said, Lin gives me stuff. This one she gave me with the warning I need to be good. Generally, that is advice that goes in and one ear and out the other. I am a brutally honest sort. One of my mother’s favorite questions for me growing up was “Can’t you lie?” I assume you get the point. [Lin/Linda: Sue is paraphrasing what I said. What I said to her didn’t include a ‘warning’.  Whatever advice I DID give her obviously went in one ear and out the other. ::grin::]

The last article Lin gave me was the results of a poll taken by general ophthalmologists, retinal specialists, and patients with AMD. The poll asked for the highest priorities in retinal research. Number 1 was “the development of choroidal neovascularization.”  Number 3 was “retinal hemorrhaging.” Both of these are, of course, related to wet AMD. The second one had to do with studying geographic atrophy, i.e. advanced dry AMD.  Number 4 was “gains in vision.” Number 5 was “slowing vision loss”, and 6 was “serious ocular events.”

Now all of these are fine and noble areas of endeavor. I don’t have a problem with any of them in theory. So, why did Lin suggest I try to behave myself and not stir up trouble? Emotionally I have some problems with it.

Imagine a kid at Christmas. Her brother gets a train. She gets told there was nothing available for her they could buy. She gets nothing.  The next year her brother gets a bigger and better train. It will run smoother and go faster. She gets nothing. Her parents tell her they thought there might have been something for her, but it didn’t work out. Maybe next year. Next year comes and brother gets all sorts of accessories plus an even better train. Nothing for our girl. Nothing available.

I am getting tired of being that girl. I go to the research and there are nine, different, exciting opportunities for advancements in Wet AMD research. The tenth one may be for dry AMD, but it is often something that has since “died” in clinical trials.  No joy again.

Very selfishly, I feel we need to be first on the list. I appreciate you wet folks go blind more severely and much faster. I appreciate eye shots can be pretty horrible. The thought of having someone put a needle in my eye might make me want to throw up.

On the other hand, I would also like you wet people to try to appreciate what it is like to come to the table time and time again (or to the Christmas tree. Sorry for mixing metaphors) and come up empty. Think of the frustration and the demoralization of religiously looking, reporting great news for other people …but finding nothing for you.

Eye shots are horrible, but if they could come up with an eye shot that would stop the progression of this disease, I would be fighting to be at the front of the line. At least it is something. Right now we have nothing. [Just to be clear, the injections for wet AMD do NOT stop the progression of AMD. They work to protect the vision a person has. Sometimes, that only works as long as one is having injections. Sometimes, sadly, they don’t work at all or for long. In either case, there is no way of knowing ahead of time – it’s an injection-to-injection battle.]

So, yes, I get snarky, and I can be offensive. Some people don’t like my snide comments about how the wet people have another, miraculous advance coming down the pipeline and we have…nothing. Please just remember how blessed you are and wish your dry brethren a little bit more than nothing under the tree…and spare me a charitable thought when I look with jealousy on what you have. It is not easy out here.

August 28th, 2018

Next: “Wrap Up” Blindness in our Lifetime!

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Disappearing Fingerprints

I am back. Yes, we have snow. About three inches. Shirt sleeves and sandals back to ski jackets and mukluks in less than 18 hours.

I am trying to get back into the webinar. When I lose the connection it kicks me right back to the beginning of the session and I have to fight with the scroll bar again. Thinking it may be the friction ridges on my fingers. They are barely there.

This is a real tangential subject – and I promise to get back on topic soon – but many of us are ‘of a certain age’ and might be interested in this. The simple fact is, as we age, our fingerprints disappear. If you ever wanted a life of crime, now may be the time!

No, seriously. They disappear. A few years back I had to renew my clearances and I had to go back to be fingerprinted at least three times. We finally just gave up and declared me safe to work with kids. It was crazy frustrating.

Another Aging Puzzle: The Case of the Disappearing Fingerprints has all sorts of neat info on this topic. You might want to look at it. Especially if you need to be fingerprinted for volunteer work or something. Get you prepared for having to go back and back and….

Back on subject: the article on nine things to think about when considering a stem cell trial. I am still looking at the bullets under the first point so this review might take a while.

Expense was another thing to consider that they mentioned. The last I looked the pay for the trial I want was $75 a day. Holiday Inn Express was giving discounts on rooms if you needed to stay. So basically, we might be able to stay for ‘free’ but meals, gas and wear and tear are going to be all ours.

Knew that. Actually, it is part of the reason I am retiring. Retired I have a pension, a guaranteed income even if I need to spend days in Philly. If you are still working and looking at clinical trials of any type, you will need to consider the possibility of lost wages. Nasty thought but it may need to happen.

Oh, and we have said this before but it is worth repeating:

We do NOT pay to be in stem cell trials or to get any other experimental treatment.

If some ‘doctor’ says he has a great, experimental treatment but you need to pay? Get out of there as quickly and graciously as possible and call your local medical ethics board. There is something wrong and it needs to be looked into.

Second bullet is covered. Yes, we know there are different types of stem cells. There is a whole bunch of science involved here but they have done all these manipulations to be sure the stem cells in my chosen trial are appropriate.

The caveat here is know your provider. Wills Eye Hospital has been ranked the second best in the nation. (What’s first? Bascom-Palmer in Miami.)

Carl Regillo, my retinologist, has credits as long as your leg. Open a page covering an ophthalmology convention and the boy’s picture is there. Too legit to quit…or to do shoddy research.

OK. That covers points 1 and 2. Bye!

Written April 2nd, 2018 Continue reading “Disappearing Fingerprints”

“Take This & You’ll Be Cured!”

Good morning! Back again.

I am sure you have noticed that this site has a real emphasis on information and research. We value the power that knowledge can give us. We also value the scientific method.

Some people may ask why that may be. It’s simple. The scientific method and controlled experiments allow us to know with a degree of certainty what is true and what works. Things are proven to within a shadow of a doubt.

Scientific method and scientific proof stand in contrast to anecdotal evidence. I would assume many of you know what anecdotal evidence is. However, for those who do not, allow me to take the podium for a second.

Wikipedia defines anecdotal evidence as evidence collected in a casual or informal manner and relying heavily or entirely on personal testimony. For example, “The world is flat.”

600 years ago everyone knew the world was flat. You look out on the horizon and everything just drops off. Terra incognita. Proceed at your own risk because you know you’re going to fall off. (Did you ever wonder what they thought you were going to fall off into? Just a random thought there.)

It took some intrepid explorers to go out and discover there was something beyond the horizon. They came back and told people just that. However, it was still anecdotal evidence. A handful of crazy sailors telling you that the world was round. It did, in fact, take a variety of explorers taking a variety of voyages (read performing experiments) to actually convince people that the world is round. These explorers proved to within a shadow of a doubt the world was round.

And you know what? I for one am glad people did not necessarily believe that handful of sailors. We should not accept everything without proof.

Very often, this reliance on anecdotal evidence happens in medicine. It happens to people looking for ways to treat their age related macular degeneration.

We hear testimonials all the time. “Take this and you will be cured!”  “It worked for my great aunt Tilly”! That someone truly believes a treatment worked for them is great. However, without scientific evidence we are not able to review it.

Nor should we. Operating on anecdotal evidence can be dangerous. Not only may you hurt yourself doing something dangerous, you could also waste valuable resources – yours and everyone else’s – on something with no value.

Why do we only talk about things that have come from clinical trials? Because the trials are controlled. That means they have tried to eliminate any confounding variables. Confounding variables are things that are outside influences that change the effects of the treatment. In other words with confounding variables we have no idea if what we tried worked. The results could come from something else entirely.

For example, you are going on a diet to lose weight. At the same time you also start walking two miles four days a week and take exercises classes three days a week. How much effect did your new diet exactly have? No way to tell, right? There are confounding variables.

Before we review anything and suggest the treatment may be promising, it needs research backing it up. We operate that way because it is the best way. We need to provide you with the best information we can. The best comes from clinical trials.

Written March 4th, 2018 Continue reading ““Take This & You’ll Be Cured!””

Don’t Believe Everything You Read

Friday evening. I have things I should do. Constructive things like cleaning the bathroom or writIng a report. Or studying the book for the home colon screening test.

Yep. Back to poop. I really need to ‘study’ for that ‘test’. Of course, my husband told me he took it and aced it. All the answers are number two!?

So much for the potty jokes, but I really could not resist sharing that one!

So, yeah. Things I should do but I am not doing them. When I got home I flopped down and watched Hawaii Five O on my iPad. It is great because of the relative distance thing. I can actually see the screen!

Then I checked my email and Lin had sent me an article about how yoga inversions are bad for us with AMD. Alrightee then. Let me move off from there.

After I scanned the article, I went to Google Scholar. I searched about six pages of references for yoga and macular degeneration. I did not find a single description of an article that sounded like it found yoga inversions bad for AMD. Not one. In fact, most of the articles I scanned sounded as if they were touting yoga as a great thing for the visually impaired.

The reason I went to Google Scholar? Because it helps you find the research. Everyone has an opinion but unless he can back it up with facts, don’t believe him! An opinion is no more than that: an opinion. That and $1.25 will get you a diet Pepsi. (I don’t drink coffee and have no clue how much a cup of joe really costs.)

The articles I saw that said don’t do inversions were on the general web and by the same person. He offered no substantiating data. His evidence, if any, appeared to be anecdotal. Anecdotal evidence is great for helping us generate some working hypotheses but to declare it as true, we need experimental proof.

I guess the lesson I am trying to impart is don’t believe everything you read in the papers. There are all sorts of opinions and theories out there. Some of them have a lot of face validity and seem as if they are true. That doesn’t mean they succeed when they are tested.

Once again, we try very hard to back up what we say here with research. If I go off the reservation in my speculations, I will tell you. “I don’t have a clue what I am talking about. Unsubstantiated opinion here!” One should never pass off her opinions as gospel.

Speaking for myself and myself alone, I am not quitting yoga even with inversions. There is no substantive evidence offered for the claims. I love yoga. I have improved strength, flexibility, endurance and even balance (eternally balance challenged; that’s me!) I love the challenges. I love the socialization. And that is that.

And now, I have found another use for my magnifier reader: DIY home surgery! There is a splinter in my foot. Can’t see it naked eye but on 9x it is a tree trunk. Nurse! Tweezers!

Written October 21, 2017 Continue reading “Don’t Believe Everything You Read”

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”

Electrician’s Nightmare

Rods and cones. I learned those words back in the sixties in science class. We were studying the eye.

Rod cells are concentrated in the peripheral sections of the retina. They work well in dim light. They play a key role in night vision. While we need rod cells for good, overall vision, they have their limits. Rod cells are lacking in sharp vision and color perception.

That brings us to the discussion of cones. Cones are located most densely in the center of the eye. Their jobs are to see sharply in bright light and to easily perceive color.

Considering many of us have trouble with sharp, central vision and ‘wash-out’ in bright light, as well as have trouble with color perception, it comes as no surprise that we, those with AMD, are a little short on cone cells. If you have seen images of the ‘divot’ in your macula, that cone-shaped hole should be full of cone cells. Mine is not.

Because we are a bit short on cone cells, cone cells were what researchers were trying to grow for us. After a number of years the breakthrough came at the University of Montreal and was published in 2015. The head researcher was Gilbert Bernier. Merci, Gilbert!

Dr. Bernier came to the idea there must be something that helps to grow all those cone cells in the macula. After all, the embryonic cells are pluripotent. That means they are capable of becoming any one of several different cells. What makes it so these particular cells became cone cells?

Bernier discovered a protein that limited the stem cells to becoming pretty much only cone cells. He actually achieved about 80% purity, a pretty much unheard of accomplishment before this.

Even more exciting, Bernier’s cells organized themselves into nice, pretty sheets of retinal tissue. Not a disorganized mess.

And if that were not enough, when his cells were injected into the eyes of healthy mice, they migrated to exactly where they were supposed to be!!!! Stem cells with the homing instinct! Pretty cool. They were doing the happy dance in Montreal.

This is a huge step but not yet the answer to replacing cone cells, the photoreceptors we lack, and ultimately our vision. As I have said before, the cone cells grown in the lab are like cell phones without a tower. They do what they should do but have no way to send the signal to the brain.

According to the Discovery Eye article on the optic nerve and how it links to the brain, there are approximately 125 million photoreceptors, rods and cones, in the human eye. These connect to two, different intermediate neuron types and 23 different kinds of other retinal ganglion cells. Some of the retinal ganglion cells communicate with as few as five photoreceptors.

In short, the eye would be an electrician’s nightmare! It is no wonder no one has been able to figure it out yet.

There is, however, a way for it to be done. The knowledge of the body – remember these cells both organize themselves and migrate accurately – is miraculous. The next step is finding out how to give the connect order. I suspect the Montreal crew is working on it even now.

Bonne chance, Gilbert, bonne chance. [“Good luck, Gilbert, good luck” for those of us who don’t know French.]

written April 14th, 2017

Continue reading “Electrician’s Nightmare”

Serious Work

ARVO is the Association for Research in Vision and Ophthalmology. According to its website it is the largest and most respected eye and vision organization with over 12,000 members from 75 countries.

Basically, ARVO is hot stuff in the vision world.

The 2017 ARVO conference will be at the Baltimore Convention Center starting May 7. If we don’t get this page published for another four months, the 2018 conference is in Honolulu. We could always go there!?

If you cannot get to Oahu, the ‘Big Island’, for next year, you can always view abstracts of presentations from past ARVO conferences online. There are sections on a variety of eye problems, one of them being retinal concerns.

The first abstract included under retina from 2016 talked about how damaging scar tissue in the eye can be for vision. While anti-VEGF drugs serve to halt the growth of extra blood vessels, they do not prevent the growth of scar tissue. Researchers are working on producing antibodies that will react with the connective tissue growth factor in a protein that contributes to scar tissue formation. This research is still in the (real) rat labs, but may someday be given to wet AMD people with bleeds. Remember bleeds can lead to scars.

The second one mentioned – oops, actually the third – talked about the lack of plasma diagnostic markers for AMD. Plasma diagnostic markers can be found in blood. Someday there may be a blood test that will allow us to determine who is going to start with wet AMD and prevent the growth of new blood vessels even before it starts.

Other abstracts included in the retina section talked about ways of improving ‘bionic eyes’ to provide more details in the images and, yet others, talked about the research being done with stem cells. While the stem cell, clinical trials I am interested in are dry AMD only, there have also been phase 1 clinicals using wet AMD patients. The researcher there, Zheng Qin Yin, reported vision improvement just as was seen in phase 1 clinicals with stem cells and dry AMD. Bonus!

In some studies the stem cell source was embryonic but in other studies they are using bone marrow stem cells. The bone marrow people are also getting promising results.

Never heard of subretinal fibrosis, but apparently someone is studying it! Philipp Roberts to be exact. Not sure why Philipp has two P’s but that is the way he is listed. Anyway……Philipp tells us subretinal fibrosis is the end stage of wet AMD. Apparently you cannot tell the difference between “regular” neovascular tissue and subretinal fibroid tissue with standard imaging techniques. Philipp is working on that.

Basically, there is some serious work being done to hopefully get us out of this mess. I have not said this for a while but I can say it here: now really is the best time in history to be going blind.

And if you are in Baltimore the week of May 7th? Thank a vision researcher for his or her effort. They should be easy to find. The website predicts 11,000 in attendance!

written April 9th, 2017

Continue reading “Serious Work”

Clinical Trial Design: Part 1

The Hypothesis

All good experiments start with a hypothesis. A hypothesis is an educated guess about what should happen under a certain set of conditions. For example, “stem cells can grow in the eye and replace worn out RPEs”.

The way I was taught, this statement is then ‘turned around’ to be the negative. “Stem cells cannot grow and replace worn out RPEs”. This ‘turned around’ statement is called the null hypothesis. This is what will or will not be disproven with our experiment. The idea is to see if we can generate a result that will be significantly different from the starting point. The null hypothesis predicts no change. We want to see if we can affect a change that is big enough to matter. Good so far?

The Plan

After deciding what we want to figure out, we need a plan. Our plan is our experimental design. We want to design our experiment so we are reasonably sure there are no stray influences that may have caused the results.

 

The groups

If we are comparing treatments or treatment versus no treatment, we need to make sure our groups are as similar as possible. If we want to see if our new exercise program is better than another training program we really would (ethically) not want 20 year olds in one group and 80 year olds in another.

This is part of the reason good experiments on clinicaltrials.gov list exclusions which means reasons why a person couldn’t be in the trial. They are looking for similar subjects. Another reason for exclusions may be related to the treatments they are using and people’s sensitivities to them. You don’t want a subject who has an allergic reaction to your treatment!

The Sample

Once we have our sample (all possible examples or cases of something is called the population), we should be reasonably sure we have controlled for most of the important variables. Variables are factors that can affect the outcome of our study. However, there are other variables we have to control for in our experimental design.

The Treatments

One of these is the Hawthorne Effect. Anyone who has ever taken intro to psych or industrial/organizational should remember the Hawthorne Effect. In a plant they were trying to increase productivity. The problem became, no matter what they did, production improved! These people could have been working in the dark with the heat turned up to 90F but they were going great guns.

The researchers discovered just the fact that they were noticing the workers and trying to do something for them was enough to increase productivity. It did not matter that working conditions worsened. The workers felt noticed. They wanted to please the researchers.

Placebo effect happens when subjects believe the ‘treatment’ is effective even though it is not. They may show improvement as a result of their belief.

You will see attempted control for the Hawthorne and Placebo Effects in studies that list themselves as ‘double blind’ or ‘double mask’. They will perform fake (sham) procedures on people in the control so they feel noticed and loved, too.

Double blind? The double is because doctors and nurses treat people getting the actual treatment differently. They may not realize it but they may be more encouraging to those actually getting the treatment than they are towards the people who are the controls. When a study is double blind neither the patients nor the people caring for them actually know.

That is my 500+ words for this one. One or two more pages and I should be done. Hang in there!


For more information, click here for Designing Experiments Using the Scientific Method from dummies.com.

Continue reading “Clinical Trial Design: Part 1”

In a Pig’s Eye

About three hours later and the ‘tapering’ snowstorm is not tapering. Anyone ever read ‘Ghost Story’ by Peter Straub? It scared my socks off on a summer day. On a day like today I would probably be quivering under the covers! [Lin/Linda: this was written in March of 2017.  In ‘real time’ it’s July 2017 when many of us in the US are having record high temperatures. Thinking of snow is ‘refreshing’!]

In ‘Ghost Story’ it starts to snow. They cannot keep the roads open and it snows. The electricity goes out and it snows. The phones go out and it snows. Eventually some smart soul figures out there is a malevolent force at work in this small, New York town. Yipes!

‘Ghost Story’ is on page 3 of the Gs in BARD. It is available as an audiobook on Amazon for $17.95. If you are still able to read print, you can get it used for about ⅕ of that price.

Another way to scare your socks off? ‘Turn of the Screw’ by Henry James. This one is a classic and free on Kindle. It is on page 15 of the Ts in BARD.

I will vouch for them both as excellent reads. Anyone else have any recommendations they would like to share? Just because we cannot see so well, doesn’t mean we cannot enjoy a good book. Since we like to think of our group as a cut above, try to avoid recommending trashy novels.  Although for a whole series of semi-trashy novels I would recommend the ‘….in Death’ series by J.D. Robb, also available on BARD.? [Lin/Linda: one of my favorites, too, but I don’t think I’d call it ‘trashy’ but definitely R-rated.   Click here for the list in order of publication date.  They’re available at amazon.com, too.  Click here for the first one ‘Naked In Death’.]

Anyway, that was NOT the way I was going to start this page. Not the topic either. I just looked outside and found it all a bit surreal. We are approaching an accumulation of two feet. Not much for some other places but impressive for Pennsylvania.

What I was going to do was tell you about “in a pig’s eye” and how the phrase now has a new meaning. For our international friends, “in a pig’s eye” is an old American expression that implies disbelief. It is the antiquated version of “No way!”

Now, they are finding a way to study drusen in a pig’s eye. Well, actually in a culture medium in which they have placed retinal ‘pig’-ment epithelium cells. (Alright, so it was corny, but I couldn’t resist.) They have found out that pig RPEs are similar in many ways to human RPEs. They have discovered the RPEs in early AMD are actually still functioning and the Bruch’s membrane may have more of a part in the process than previously believed.

This should just be the first of many good discoveries to come out of the pig’s eye experiments. Because they are now able to do a lot of manipulations of pig RPEs being grown in cultures, research can go faster. A lot faster than it would go trying to get people to have all these manipulations done on THEIR eyes.

So there is ever increasing hope here. When you tell people there is a bright future for AMD folks and they say “in a pig’s eye!”, your response can now be “Exactly!”

Keep on keeping on. There is hope.

Now could somebody stop this snow? Enough is enough already! Continue reading “In a Pig’s Eye”

Beware Snake Oil

Happy Sunday to you! Lin and I have been emailing back and forth. Since I have another glimmer of hope about the clinical trials, we have been talking stem cells.

I am very optimistic about stem cells. I have known from the instant I saw the Wills studies on clinicaltrials.gov that it was the way I would be going.

I have not wavered in nearly a year and a half and I am not wavering now.

That said, do you remember when I talked about the three states of mind? I try very hard to stay in wise mind on this issue. Wise mind is the melding of emotional mind and reasonable mind. Emotional mind fuels but reasonable mind guides.

Going online we have noticed a lot of what I can only call testimonials to amazing new treatments. These popular press articles all talk about one person – that was one, 1, uno – person who has recovered his or her sight due to this miraculous, revolutionary new procedure, whatever it might be. To me, it seems stem cells have become the new snake oil.

OK. Now some of you just got your hackles up. Calm down. Sometimes snake oil worked. Not saying it did not. However, until it was evaluated pretty thoroughly we did not know a great deal about what it was, what it could do including harm, etc. Lots of harm has been done in the name of treatment.

For example? Blood letting. A president no one ever thinks of, Rush, was killed by bloodletting. It was an acceptable practice. I don’t imagine many of you have had blood removed to cure a disease but I am guessing you may know one person who has. Bloodletting is a proven treatment for Polycythemia Vera, a condition in which there are too many red blood cells. A treatment may have a beneficial use. We just need to find out what that use is. And we need to do it scientifically…at least in my not so humble opinion.

I am cautiously optimistic about stem cells. I have an internationally known doctor at an internationally known facility. The two studies I am signed up for are funded by large, reputable corporations. I even have the informed consent documents already!

What about you? First of all, I would like to think I could influence you to only go someplace with the credentials Wills Eye Hospital has. If that is not possible, ask questions and do your homework without committing to anything. Remember desperate people are vulnerable people. Also, even if the people you are dealing with are decent human beings, their theories or procedures could be faulty or simply not right for you.

What questions to ask? The American Speech, Language and Hearing Association – of all places – published a very nice list (with extensive links; gotta love those speech teachers!) in What to Ask When Evaluating Any Procedure, Product or Program. Read this. Take a copy with you and ask the questions. If you don’t get decent answers, turn around and walk out. Use your desperation, fears, hopes as the fuel but let your reasonable mind do the steering. Stay in wise mind on this one, guys.


Lin/Linda here:  Sue wrote this in December, 2016.  Yesterday (March 16, 2017) an article was published in the New England Journal of Medicine about 3 women who became blind after stem cell injections for which they paid $5,000 from an unnamed clinic in Florida.  The news spread fast and articles were published and widely shared by large news organizations (NPR, CNN, the major TV stations ABC, CBS, and NBC and the New York Times), by macular degeneration organizations (The Macular Degeneration Partnership, Macular Degeneration Association and The Macular Society in the UK) and by several professional organizations for those in the field of vision & eye care.

What went wrong?  This article Three people left blind by Florida clinic’s unproven stem cell therapy says it best from what I’ve read:

  • First there is almost no evidence that the fat/blood stem cell combination the clinic used could help repair the photoreceptor cells in the eye that are attacked in macular degeneration.
  • The clinic charged the women $5,000 for the procedure. Usually in FDA-approved trials the clinical trial sponsor will cover the cost of the therapy being tested.
  • Both eyes were injected at the same time. Most clinical trials would only treat one eye at a time and allow up to 30 days between patients to ensure the approach was safe.
  • Even though the treatment was listed on the clinicaltrials.gov website there is no evidence that this was part of a clinical trial, and certainly not one approved by the Food and Drug Administration (FDA) which regulates stem cell therapies.

 

Continue reading “Beware Snake Oil”