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.
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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.
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June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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:
- 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?
- Sue’s journal pages which are like chapters in a book
- Highlights & News which are basically blog posts
- 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.
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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.
2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated. I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey. Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.
Frequently Asked Questions
Click here for the list of Frequently Asked Questions from our Facebook group.
AREDS2-based Supplements
There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.
AREDS2-based Supplements With 0 or 25mg of Zinc
Click here for the list.
Navigating
There are a lot of links here. I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS. When you are done with the new page you opened, just close it. You do NOT need to use the back option. If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.
Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.
Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.
Topics-click below to move to a topic
Links We Like
- Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
- Click here for a great glossary
- Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
- Videos
- Click here for several videos
- Click here for the UK Macular Society’s Say Hello to Mac
- Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
- Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
- Click here for an article about depression after diagnosis
- Click here for a very comprehensive page about wet AMD
- Click here for a very comprehensive page about dry AMD
- Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
- Click here for a short introduction to stems cells, what they are and how they can be used.
See what vision is like at the various stages of AMD
Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.
Glossary
Websites devoted to AMD and Other Forms of Macular Degeneration
listed in no particular order
Websites containing information about AMD and Other Forms of Macular Degeneration
listed in no particular order
Support
I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one you’d like to add.
Message Boards including ones from
By postal mail
I don’t know if these are still accurate.
- Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
– Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
- Macular Degeneration International
is now a part of Foundation Fighting Blindness
Toll Free Helpline 1-800-683-5555
EMail: MDInfo@blindness.org
– Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
- Vision Support Group-download video presentations This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases. You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport
Where to find services
- In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
- In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
- In the US: click here to search for a wide variety of services (more than the link above)
- In Australia: click here to find an ophthalmologist and optometrist
- Worldwide: click here for resources worldwide
Resources for Students
Books and reading materials
Specific Titles
Sources of Books
Formats: Braille, large print, e-book and audiobooks
Videos
Personal stories of living with AMD
Online newsletters
What is AMD?
Wet Form
Dry Form
How fast does AMD progress?
- A good article about how difficult this is to answer
- Great video that explains why early detection is important especially when detecting the change from dry AMD to wet
What is Stargardt’s Disease?
Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.
The Science Stuff
Role of RPEs
Geographic Atrophy
Symptoms
Charles Bonnet Syndrome/Visual hallucinations
Other problems with vision & AMD
- problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
- eye problems that have similar symptoms as AMD:
Risk factors
Age
- Age is a large factor but can start earlier
- Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others. See Stargard’s Disease section above.
Diet/nutrition (working on this section)
- diet low in various nutrients & high in others have been linked to AMD.
- See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.
Race
- Caucasians more prone to AMD than African-Americans or Hispanics/Latinos (several references to this but no recent studies).
- 2012 database search ‘AMD by race’
- Study about the higher-than-other-racial-group incidence of AMD in those of Chinese heritage.
Gender
- AMD more common in women perhaps because women live longer than men
Uncontrolled high blood pressure
Uncontrolled high cholesterol
Smoking
Blue Light
Eye Color
Aspirin & other medications
Other possible causes
- Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.
Connection between AMD and Alzheimer’s Disease
Treatments
- FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)
Research/Clinical trials
- Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)
- Summary of Research & Developments 2017
- Research in the UK into earlier detection and treatment
- Click here for a 28-page brochure from the National Eye Institute (NEI) called “Clinical Trials in Vision Research: Information for Volunteers
- Click here for more information about ongoing clinical trials for dry AMD.
- Click here for more information about ongoing clinical trials for wet AMD.
- Sustained-release treatments for wet AMD (after you read this article, if you are interested, do a search on the link above to ‘more information about ongoing clinical trials for wet AMD’.
- Study where drug in an injection would last longer than current drugs for wet AMD.
- Article CNN March, 2016, article about ongoing clinical trial in London which has had encouraging results. In addition to information about the study, it includes a simulation of vision loss due to AMD, a description of the disease process, and a good explanation about how stem cells work for AMD and other diseases.
- Click here for a description of the Audacious Goals Initiative (AGI) and what it is. Briefly, it started as a contest to come up with the most innovative goal for improving vision. The ‘winning’ goal is “to regenerate the neurons and neural connections in the eye and visual system.”
- Key Research including AREDS, AREDS2, Blue Mountain Eye Study, The Beaver Dam Study, and others
How can I become a part of a clinical trial?
- A list of sources of information about clinical trials and how to find out for you to participate in.
- You can search for clinical trials from the links above
- There are registries where you sign up and enter information about the status of your eyes. Researchers will use this information to find people that match their research and contact you. Click here for more information about these registries in the US and elsewhere
Gene Therapy
Bionic Eye/Retinal Implants
- What is a bionic eye? It’s also called retinal implant or retinal prosthesis. Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
- Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
- March 21, 2016 UK Bionic eye being tested
- Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.
Nutritional Supplements
- See Vitamins/Supplements section below.
Stem Cells
Coping with low vision
Low Vision Aids
Wearable Technology
Suppliers of low vision aids
Financial Help
Sunglasses
Lamps
Transportation
- A website for the US where you enter your zip code and transportation options for your area will be shown.
Bioptic Driving
Depression
Checking vision
Amsler Grid
Self maintenance/self care
Low vision rehabilitation
Vitamins/Supplements
Nutrition
Exercise/Activity
More to come, you can check out these posts now
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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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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.
Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.
2024 Most Recent Pages
Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial
2016
Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.
2019
It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023). Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.
2022
In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.
2023
She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.
After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.
She also wrote What Does Syfovre Mean for You?
She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.
First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.
2024
You can choose:
- To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
- To get a list of ALL pages (some of the more recent ones may not be here yet)
- If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)
Sue’s Toolkit – 2 Years Later – Part 1
Sue’s Toolkit – 2 Years Later – Part 2
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