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

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.

 

 

Hope Through Research – Second Quarter 2020

There are so many research studies in progress for AMD that it’s hard to put them all into one article so I’ve been writing and collecting a series of articles. The research ranges from early, pre-clinical trials (in the laboratory) where they’re studying the disease process to the potential replacement of an eyeball! In between there is research into:

  • cures for macular degeneration and other blinding eye diseases
  • better treatments for wet AMD
  • actual treatments for dry AMD
  • gene therapy research to stop macular diseases including AMD as well as types of macular degeneration caused by genes
  • stem cell research to replace retinal cells that are damaged
  • ‘bionic’ vision which is any of a number of types of vision improvement using technology which includes retinal implants, lens implants, implants into the visual cortex of the brain,and even eyeball replacements!
  • technology to help those with low vision such as the existing headworn devices and the ones being developed

Find Out More!

A Cure!

A Cure in Our Lifetime? There are many groups of people and organizations around the world who are working toward a cure!

Summary 2019

Summary of Research and Developments-2019

Audacious Goals Initiative

The NEI Audacious Goals Initiative: Bold Research to Restore Vision. An older article but this initiative continues today.

Dry AMD

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

Wet AMD

Have Wet AMD and Hoping for Something Other Than Injections?

Gene Therapy Research

Gene Therapy Research for AMD. Stopping the Disease

Stem Cell Research

Restoring Vision: Retinal repair: Bringing stem cells into focus

Stem cell transplantation: Restoring vision in AMD may be possible

My 2-part article ‘Retinal Repair Using Stem Cells – Background & Current Status–> (there’s a link at the bottom of part 1 that will take you to part 2)

Bionic Eye

Can refer to a retinal implant, a lens implant, brain implant or the replacement of the eyeball.

New Bionic Eye Research: Computer Chip Implanted in Retina for Those With Severe Vision Loss

Retina Implant, Stem Cell Studies Set for Space Station

Technology

Technology for Those with Low Vision: Have Vision Loss? “One to Beam Up!”

From the Top of the Pile

Greetings. Another day gone, but I am not sure where. After doing some work-work and yoga and a puppy walk and other assorted nonsense, I decided some of the piles in my home “office” – and believe me, I use the term loosely – had reached critical mass. What do I have in this mess, exactly?

Well, it appears generic drugs for wet AMD are coming our way. Or maybe they are “look alike,” drugs but that term has a bad connotation. The article says “biosimilar” so maybe we can go with that.

Whatever term you use, the Indians are coming up with some medications that pretty much do the same job as some anti-VEGF drugs being manufactured here and in Europe. The one the Medscape article highlights is called Razumab and it is a stand-in for ranibizumab.

The article goes on to explain biosimilar drugs are designed to replicate the molecular structure of existing biologics. Like generics, they cost much less…hmmmm. I don’t think I have to guess what big pharma thinks about that!

As might be anticipated, these biosimilars are not yet available in the States. The FDA has not yet approved any biosimilar for ophthalmic use but that does not mean it won’t happen. The Wiki people have a current list of 11 biosimilars already approved.

As of the date of the article, they were having a few problems with manufacturing consistency from batch to batch. In other words, not yet ready for primetime. However, stay tuned.

We did a cursory look at the Retina Specialist Pipeline Update several pages ago. Looking at all of the potential new treatment for wet AMD, I kept seeing the term “novel antibody.” I just did a search and did not get far on that term. My best guess is they are manufacturing new antibodies for specific purposes.

Anyone want to explain “novel antibody” in one and two syllable words, I would like to hear from you.

And here is an article of everyday practicality from WebRN. The title of the article is Macular Degeneration Aids for Grooming. The article suggests a lighted make-up mirror for both sexes and electric rather than blade razors. The better to not cut your own throat, my dears. Shampoo should be in pump bottles so you are not fumbling with the cap and/or spilling slippery shampoo in the shower or on the bathroom floor. You can also get body lotion in pump bottles. Same concept.

Although the WebRN article does not say so, a system to distinguish your shampoo from your lotion is also a good idea. For example, some people put one rubber band around one container and two around the other. Or, pick products with distinctive scents. Strawberry shampoo and lemon lotion, for example. Yes, there is a risk of ending up smelling like a fruit salad but that is better than “washing” your hair with body lotion!

So, my one pile is a little smaller now. There is so much good stuff out there! We’ll just keep looking at it for you. And if you have any topics you want to be covered, let us know. Otherwise, you might just keep getting what floats to the top of the pile!

Written August 19, 2018

Next: Life is Not Fair

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Lights Please!

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

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

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

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

Ok. I am clueless.

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

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

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

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

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

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

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

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

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

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

Written June 26th, 2018

Next: Pushing the Envelope

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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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The Patch

8:00 pm and I am rewarding myself. I just had a piece of chocolate and I am playing dance music on my iPad. This was the second day in a row I have felt as if I have actually accomplished something. Hallelujah. The to do list is starting to dwindle!

It won’t stay that way. Of course not. I know me. Besides, it is not good to become redundant. Meaning and purpose are like air. We need them to survive. Stay busy!

And on that note, I guess I should stop waxing philosophical and get to work here.

Lin sent me another article. As I alluded to on the last page, this one was about the development of a membrane to support the stem cell-derived RPEs. The research just keeps moving along!

It turns out this new development is coming out of Southern California. Specifically, the University of Southern California, the California Institute of Technology and the University of California at Santa Barbara.

Stop there a minute. University of California at Santa Barbara (UCSB)? Pete Coffey is at UCSB! The good Professor Coffey is co-director of their Molecular, Cellular, and Developmental Biology department. Gee, do you think there could be a connection? ? [Lin/Linda here: Professor Coffey is one of the researchers at Moorfields Eye Hospital in London who conducted the clinical trial that recently made the news with positive results of a similar trial conducted with 2 participants with wet AMD.  He is also Director of the London Project to Cure Blindness.  I found out that he splits his time 50-50 between University College London (UCL) and University of California Santa Barbara (UCSB).  He isn’t directly involved in this study but does collaborate with the UCSB researchers.]

OK. Now it’s time to stop being a smart a** and tell you what they did; right? Right!

What they did was develop a “bioengineered implant consisting of stem cell-derived, mature, polarized retinal pigment epithelial cells in a single layer on an ultrathin synthetic parylene membrane”. Yikes. Let’s ‘unpack’ that as the saying goes.

Wikipedia gives an obscenely long and complicated explanation of bioengineering. You can look at it and figure it out if you wish. The definition in thefreedictionary.com was more simply “the application of engineering principles and technology to the field of biology, especially biomedicine, as in the development of prostheses, biomaterials, and medical devices and instruments.”

We have gone over stem cells quite extensively. We also mentioned that RPEs are polarized but I will go into that a little more deeply. In biology having polarity means the cell has distinct anterior and posterior parts. There is a ‘head’ and a ‘tail’. If they don’t line up right, they don’t work right.

Parylene is a polymer and is ‘green chemistry’. I refer you back to Wikipedia if you are interested in reading more. Social scientist here!

The purpose of putting the stem cell-derived RPEs on a membrane was to support them and and maintain their polarity. The patch was delivered to the back of the eye via the subretinal space (which we have talked about before) during an outpatient surgical procedure.

So how did they do? Apparently pretty well. Bear in mind it was only a phase 1/2a trial and there were only a few subjects, but the ‘patch’ seems to have integrated well and some of the people showed improvement in visual acuity.

For you on the west coast: they are enrolling subjects in six, different locations in California and Arizona. The clinical trial number is NCT02590692. If you are interested, get crackin’! Their numbers will be very small.

Next: Picturing AMD

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Optimistic for 2018

TGIF. Thank God it’s Friday! Not that the weekend is going to give me much reprieve. I have exercise classes on Saturday and a party on Sunday not to mention puppy parenthood, housework and several reports to write.

There is no rest for the wicked. Not that I have been exactly lax. This just seems to be a life with a lot to do…and I like it. I like it!

Nice to see in Newsweek and the Daily Mail that being busy and stubborn lead to longevity. Those of us with a strong work ethic, pure cussiness and a need to be in charge seem to take the years a little more easily.

There is certainly going to be a lot to do this year. In 2018 I turn 65 and need to navigate Medicare and some sort of other insurance for my cradle-robbed husband. My calculations indicate I am losing over $6,000 a year by still working at the school. My pension would pay a lot more. That and my ever failing eyesight suggest retirement from there and working full-time at the psychology practice may be the way to go. I still have some things to check out so we will see. Keep you posted.

We have a big project coming up at the office. We get to be involved in a statewide training for DBT this Spring. I have several ideas about what I want to do with that. I have discovered I really like to teach and I believe DBT is needed by our younger folks. I would love to introduce DBT in the schools.

Like I said, lots to do and I am optimistic about my opportunities. And that includes my opportunities for my vision.

Did you see Luxterna gene therapy is now on the market? Luxterna is $850,000 for a treatment! That is a hell of a lot of bake sales but I would expect many if not most communities would work to buy vision for some little guy or girl.

Remember Luxerna works by modifying the gene RPE65. RPE65 ‘recharges’ chemicals in the retinal pigment epithelial cells so they can still participate in the visual cycle. If they can reprogram RPEs to do that, how much longer before they can modify them for our diseases?

I have it on pretty good authority the APL-2 studies launch again this calendar year. That’s exciting. What is also exciting is I believe the Astellas Pharma stem cell trials will get going this year as well.

Progress is being made. Lin shared a recent article on how they are increasing the success rate for transplanted RPE stem cells.  Optimally RPE cells are to line up and form a single, functional layer of cells only one cell thick. This is everyone nose to tail, all facing in the same direction.

In order to do this the RPEs have to have well-developed primary cilia on them. Primary cilia are little, hairlike things that generally serve as the sense organs of the cell. Lab grown stem cells often don’t have the best cilia on them. When they line up, things can get a little wonky.

Kapil Bharti and the folks at the National Institute of Health have discovered a drug that helps RPE cells grow beautiful cilia. Beautiful cilia cause the RPEs to line up in pretty lines and the results of the transplant are more successful. Ta da!

So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.

Best wishes for 2018.

Written January 5, 2018 Continue reading “Optimistic for 2018”

BIG News!

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

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

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

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

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

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

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

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

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

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

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

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

Continue reading “BIG News!”

Yesterday’s News

Good morning! Lin just shared a video clip from something that looked like a local TV, health program. The clip was on geographic atrophy. That is GA to those in the know.

I have no problem with information being shared with the public. In fact, I think it is a good thing. The more exposure we get and the more noise we make I am hoping two things will happen. One would be law makers (read the deep pockets of government) will be more aware and sympathetic to our plight. (They might also come to realize it is going to cost BIG bucks to care for us!) The other will be people who have AMD will become more knowledgeable and go for help and support.

There are some drawbacks to these little TV presentations, though. For one, they are a bit behind the curve when it comes to breaking new news. The show talked about a fantastic, recent development that would help people with GA.

Fantastic? OK. Helpful? Yep. Recent? Only if you consider research published in 2013 to be recent.   So shoot me. I am an information snob. That information was just too yesterday’s news for me.

I also think they present half information. If you listen to the clip you will hear the expert talk about a ‘subset’ of patients who cannot be helped with current treatments. Not to put too fine a point on this – and look out because I can feel myself getting ready to rant! – but, honey, the group that can be helped with current treatments is the subset! 15% of AMD patients ‘go wet’. The 85% of us who are left are not the subset! (Told you I was going to rant!)

In the clip there is the implication that replacing RPEs will restore sight. We have talked about this a dozen times before. In GA the photoreceptors are dead. There is no sight without photoreceptors. The RPEs are support cells for the photoreceptors. They do not do any of the ‘seeing’.

But my big complaint about this clip? The expert says your world ‘ends’ when you develop GA!!! (Now I am really revving up. Head for the storm cellar!)

With every significant loss, there is a time of dismay and distress. That does not mean the end of your world! Everyone of us here is made of tougher stuff than you could ever have believed. Maybe you have never been tested before, but the steel is there.

Today I taught my class. I attended a staff meeting and saw two clients. Then I came home, walked the dog and made a meal. I am now writing this page. After that I have a psych report to write. Then maybe some down time ‘reading’ a BARD book.

Tomorrow I work, walk with a friend and go to my yoga class. I am making plans to go into New York City with a co-worker next month. The list goes on.

In short, if my world ended a year and a half ago, nobody bothered to tell me about it! I am still going pretty much full tilt!

So, bottom line? I guess it would be listen to the stuff in the media but remember it might not be accurate or current. Once again, caveat emptor. Best sources still remain published research. If you cannot read it or cannot understand it, ask Lin or me to look at it and we can tell you we don’t understand it either!

And about that end of the world business? Don’t believe everything you hear! GA is not a walk in the park. However, if you want to, you can still do that and dozens of other things as well.

Continue reading “Yesterday’s News”

News: Stem Cell Clinical Trials in the UK

For Those in the UK

Click here for an article about a UK patient at Moorfields Eye Hospital in London as part of The London Project to Cure Blindness.  Click here for the press release dated September 28, 2015, that describes the ongoing project.  The patients in this study have wet AMD.  This is apparently the first study of its type in the UK.

Click here for more information about the stem cell research trials including 2 videos and a graphic illustration of where the stem cells are implanted.

Want to know more about what stem cells are, where they come from, and how they are used?

For more information about stem cell research, click here to read Sue’s page where I’ve placed quite a few links to helpful articles.  There’s also a link to the clinical trials website for the US.

For more information

News: Stem Cell Treatments – Successes, Concerns, US Legislation

 

News: Summary of AMD Research & Developments for past 12 months – June 2016

Here’s an excellent summary of the research and developments in the field of AMD.  It’s done by Dan Roberts of mdsupport.org which is a site I highly recommend for both information and support.

Click here for the audio with slides presentation. You don’t have to be able to see the slides, the audio is very clear.

Click here for a transcript of the presentation.

 

News: Surgery for Wet AMD

 April 2016

We can’t transplant the retina (yet) but researchers in Italy have had success replacing damaged tissue below the retina in the choroid layer with tissue from the patient because it has less chance of being rejected. Tissue taken from the patient and moved to the choroid is called autologous choroidal transplantation.

Click here to review ‘the science stuff’ regarding how the eye is structured.

Here are 2 articles about the procedure.

Click here for a more technically-oriented article in Ocular Surgery News.

Click here for an easier to read version in WebRN.

 

News: Smoking Makes Your Vision Poor Shows Research

April 11, 2016

Article from India:

With a surge in eye-related diseases in India, Ophthalmologist have said smoking is emerging as one of the major reasons behind vision-loss among patients. However, only 10-20 percent people are aware of it.

According to the doctors, several studies have shown that smoking increases the risk of age-related macular degeneration, cataract, glaucoma, diabetic retinopathy and dry eye syndrome.

Click here to read the entire article.

 

 

News: The App That Helps Blind People See

3/21/2016 A video & article about an app called Aipoly Vision which has been tested for object identification.  That means the person points their iPhone or iPad at an object and they will hear the name of it if it’s in the database of 1,000 objects (they’re working to expand that to 5,000 objects).  It uses the iPhone’s built-in accessibility functions.

Click here to learn more about this.  It also talks about another app to read text such as restaurant menus.

The Aipoly Vision app is free from the App Store or iTunes.

News: Apple releases new feature for iPhone that will help people with low vision & others

  • March 2016: Apple just released a new feature for people with low vision & those of us who want to prevent it.  Research shows that blue light from various sources (see below for more info) can adversely affect our vision.  Also, there is some evidence that the blue light from our mobile devices when used at night will make it more difficult to fall asleep.  The new feature called Night Shift allows you to adjust the screen on your iPhone so that it is ‘warmer’.  Read more about it.  You need to update your iPhone’s IOS to at least 9.3 first.

Welcome!

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.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

Blog Posts

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We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

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