Category: Highlight

Highlight: “Beyond the tip of the iceberg – AMD and nutrition” 10/25/2018

I am sorry it’s been so long since I’ve sent out an email.  I’ve been a bit ‘under the weather’ (I’ll have to look up where that phrase came from). Sue’s been busy doing what Sue does which is just about everything! ::grin::

Disclaimer: Self-treating any eye condition and avoiding or delaying standard care may have serious consequences. Any of these recommendations are not intended to be a substitute for the medical advice given to you by your internist/general practitioner/primary care physician and your retinal specialist.

There’s always frustration when a patient with early AMD is told that they’re not candidates to take the AREDS/AREDS2 supplement.  “What do I do?” I get the same question if someone doesn’t have AMD but has a strong family history. What about those who are aging and are concerned about their risk? Those are the same questions asked of eye specialists who have patients in these categories.

I found an article Beyond the tip of the iceberg – AMD and nutrition written by Dr. Rohit Narayan who is a therapeutic optometrist in England. His October 2018 article reviews some of the more recent studies about how nutrition affects the development and progression of AMD.  The AREDS and AREDS2 studies provided the most significant evidence that a specific formulation of vitamins and minerals can reduce the risk of advancing to wet AMD for those who have intermediate AMD or wet AMD in one eye but not the other one.  Dr. Narayan considers this group to be at the tip of the iceberg of those who are concerned.  He writes, “So, what advice can the busy clinician give to a patient regarding diet and its effect on eye health?”

I’ve taken the illustration of 5 layers of his iceberg and summarized his recommendations for 4 of them. The 5th one (bottom layer) will be coming when he publishes his recommendations in a future article.

 

Start here:  Article: Beyond the tip of the iceberg – AMD and nutrition – Part 1. At the bottom of each page, there’s a link to the next one.

 

 

Highlight: Can wet AMD turn to dry AMD? 10/2/2018

We have a GREAT Facebook group (as I’m typing, there are 1,898 members, but that will change shortly since I add at least a few new members every day).  They share information and ask me questions and also ask questions of other members.  That’s one of the reasons that I started the group: to encourage discussion.

A recent discussion of what happens after anti-VEGF injections brought up the confusing use of the word “dry” when talking about wet AMD.  Doctors will often tell patients, “Your eye is dry,” or, “Your AMD has dried up.”  One of the members said that’s what she was told. Another member asked, “Can wet AMD turn to dry AMD?” Because of the confusing use of the word “dry”, other members said, “Yes!” It turns out that they were mostly referring to the correct use of the word, but I thought it a good time to clarify this.

When the doctor tells you that your wet AMD is now “dry”
Click on image to see a larger version of this illustration.

In the diagram, going from left to right is the disease PROCESS from no AMD to dry then to wet AMD. Not everyone gets to the last & wet stage (10-15% of those who have AMD), but if they do, the disease process continues. If the injection was successful, the fluid that was leaking has “dried up.” Do NOT let down your guard thinking you have dry AMD and stop checking your vision or going to the eye specialist. Unfortunately, there is no way to reverse the disease process yet.

Another way to view the process
Click on the image above to for a larger version of the diagram.

This diagram is from the most comprehensive page on wet AMD I have found. Some of it is highly technical, but it should give you a sense of what happens when the disease process of AMD progresses to wet.  There are no arrows pointing up at the bottom of the diagram. The fluid from wet AMD can ‘dry up’ – that’s the objective – but the disease process does not go back to an earlier stage. Some people will say that if the macula is “dry”/”dried up”, the disease goes “dormant.” Regardless of the terminology, the disease process cannot be reversed yet. The injections treat the symptoms that affect visual acuity.

Another name for wet AMD is CNV which is Choroidal NeoVascularization (CNV is also used in other forms of macular degeneration).  The choroid is where the blood vessels are below Bruch’s Membrane and the RPEs and photoreceptors (see the illustration at the top of the page).  Neo means “new” and vascularization is abnormal or excessive formation of blood vessels.

Do you have questions about wet AMD?

Of course, we’d love if you’d join the Facebook group, but we know that some of you have chosen not to for various reasons – and that’s okay.  If you have questions, please put them in the ‘leave a reply’ section, and I’ll answer them as soon as I can.

 

Highlight: Summary of Research & Development 2018

In the 2 years that Sue & I have been doing what we do, we’ve learned from & interacted with people in the field whom we trust and respect. Dan Roberts is one of them. He has had AMD for many years & has shared his journey & developed many helpful resources. He’s an author and director of the International Low Vision Support Group, an active and much-respected organization. Every year he publishes his Summary of Research and Development.  This year’s report includes the topics:

discontinued and delayed trials
updates on continuing trials
gene therapy
combination therapies
surgical interventions
nutrition
stem cells
daily living
new technology
the future

The Future

It’s important that you read his section The Future so here it is in Dan’s words:

“Finally, let’s look at the future. The rate of research and development is moving at an exponential rate, covering many areas of treatment and daily living:

– Continued refinement of surgical techniques
– Continued successes with stem cell and gene replacement research
– Advances in pharmaceutical therapies, including development of biosimilar drugs, which equal the safety and efficacy of current drugs at a lower cost
– New ways for patients to monitor their own progress at home
– Development of systems for diagnosis and treatment via the Internet, saving time and money spent for clinical visits
– Improvements in audibility of assistive devices for those who are both visually and hearing impaired
– Increased accessibility of portable independent navigation systems for travel both outdoors and indoors
– Integration of audible speech into assistive devices

We will continue to follow all of this action throughout the coming years and keep you updated with newsletters, email news alerts, and these annual summaries. Knowledge is the best way I know of to keep the fear of the unknown at bay, making living with low vision less stressful, and acceptance a little easier. – Dan Roberts

Click here for the full report.

UPDATED: Are there eye drops instead of injections to treat wet AMD?

The short answer to that question: not yet.  There is a major problem in developing eye drops for AMD.  One article states it as “Ophthalmic drugs have traditionally been administered topically, which in general provides therapeutic levels to the anterior (front) chamber of the eye but not to the posterior (back) segment. Therefore, topical administration of drugs has been largely infeasible for posterior segment diseases such as AMD and diabetic macular oedema.  In contrast, intravitreous injection [for wet AMD] provides direct delivery to the posterior segment and allows therapeutic levels to be attained.”

Here are the studies so far (there is other research that I’m not including that is currently only being done with animals).  Keep in mind that there are four phases to clinical trials.  Click here for more information about clinical trials.

  • PAN-90806/Panoptica: topical Lucentis
    • clinicaltrials.gov Phase I completed
    • “A phase I/II trial of the next generation of the formulation is set to begin in the first and second quarters of 2017.” Click here for an article.
  • OHR-102 (originally “Squalamine”): squalamine has been shown to interrupt and reverse the process of angiogenesis; used in conjunction with Lucentis injections, goal is to reduce number of injections or eliminate them.
    • clinical trials phase III not recruiting subjects,  completed in mid-2019.
    • click here for an article.
    • Temporary suspension of clinical trial phase 2, not due to safety issues.  Going forward with phase III.  “Effectiveness: Unfortunately, Squalamine Eye Drops failed to decrease the average number of Lucentis injections required by the study participants. This was the primary goal of the clinical trial and the result was disappointing, both to researchers and to people with wet AMD, who were hoping that Squalamine Eye Drops could possibly reduce, or even eliminate, the need for eye injections.”
  • CPP: cell-penetrating peptide (CPP) can be used to deliver therapeutically relevant doses of ranibizumab (Lucentis) and bevacizumab (Avastin)
    • University of Birmingham, England
    • click here for an article.
    • “This is exciting for both patients and practitioners,” said Dr. Jayanth Sridhar, assistant professor of clinical ophthalmology at the Bascom Palmer Eye Institute. “But this was a preliminary study in animal eyes only. Further research must be undertaken in human subjects first to establish safety, and then to establish effectiveness. Still, this study offers at least a glimmer of hope that in the coming years we may see a topical drop option emerge to supplement or replace injections.”
  • OC-118: “solubilizing nanoparticle” technology
    • Article Jan. 6. 2018 says “This technology, the company hopes, can boost the drug’s ability to reach the front and the back of the eye — something that previous drugs haven’t achieved unless delivered via needle to the eye.” It is currently being looked at to treat Diabetic Macular Edema (DME). I couldn’t find anything to confirm or deny that it could be used to treat AMD.

Updated & verified 1/8/2018

Updated: Where can I get support?

There are many reasons why a person with AMD might look for and benefit from support.  Click here to read a great article about how the initial reaction to a diagnosis of AMD is like going through the stages of grief

There are support groups on the computer and off.  Some are led by peers and some by professionals.  You may find a support group that you can attend in your area sponsored by low vision professionals and organizations, senior groups, schools, libraries or that are put together privately by other people with the same problem as you.

On the computer you can find support groups that meet:

  • using video, audio or text chatting in ‘real time’ (also referred to as ‘live’).
  • using messaging systems also called discussion groups or message boards.  You can leave a message at any time for other members of the group and read messages posted by others.

Click here to read about the benefits of support groups for people with AMD.

Message Boards/Discussion Groups on the computer
By email
Meet in person
On the phone/telesupport
Start your own

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.

More information by postal mail
  • 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 degenerations including Stargardt’s disease.

Do you run a group that is not on the list?   Do you belong to a group that is not here?  Please leave a comment on this page or send me an email at light2sight5153@gmail.com so that I can add it. Thanks!

Original post May 10, 2016; updated October 10, 2016, June 21, 2017.

Highlight: What foods should I be eating for good eye health?

Nutrition for Good Eye Health – the Basics

Disclaimer

Eye Healthy Nutrients

Click here for a good place to start to learn about aspects of nutrition that have been recommended for good eye health.

 

<–Click on the photo for a larger image.

Click here for more details from AOA (American Optometic Association) about this infographic.

 

 

 

Click here for a printable grocery list.

 

 

 

 

 

 

Diet Plans for Good Eye Health

            • not listed in any particular order; we aren’t making any recommendations & we make no money on the sale of any of the products below.
            • Macular Degeneration Diet and Prevention Plan by Dr. Stuart Richer, OD, PhD, Ocular-Nutrition Laboratory in DVA Medical Center Eye Clinic, North Chicago, IL
            • Eyefoods has a diet plan that you can learn about in their book, on their website, Facebook page or blog
            • Eat For Your Sight Cookbook from the AMDF (American Macular Degeneration Foundation), the cookbook is available here or through amazon.com
            • Mediterranean Diet for eye health
            • Anti-inflammatory Diet
            • Cure AMD, proposed eating plan (based on ‘ancestral diet’) to prevent AMD and reverse it in its early stages.  I’ve corresponded with the author & expressed my concern about his use of the word ‘cure’.  He said he believes so strongly on his research that he could not use any other title.
      • Disclaimer:  We have a standard disclaimer that no one reads ::smile:: so I just want to remind you that we say in it:
        • Any information, books, products or any other materials at My Macular Degeneration  Journal/ey are not intended to treat, diagnose, cure or prevent any disease, disorder or health condition, and is provided for educational purposes only.
        • Always consult your doctor with eye health questions about your specific medical conditions and before starting any diet, exercise, or supplement program.

Go to the Top

Highlight: Where can I find books in formats for people with visual disabilities?

Sources of Books

  • Formats: Braille, large print, e-book and audiobooks; some services for free if you qualify
  • US Library Service provides ‘Talking Books’ in Braille & audio; you need their e-reader
  • US BARD (Braille and Audio Reading Download) also from the US National Library Service; you can read them on an Apple or Android device or app
  • US BARD & BARD Mobile: YouTube video talking about the service
  • US & Canada Sources of large print & Braille reading materials
  • UK RNIB Overdrive: ‘Talking Books’ by digital download
Worldwide
  • Worldwide Kindle e-book readers: which is the right one for people with low vision?
  • Bookshare:
    • US BookShare: 300,000+ titles including all current and recent NY Times bestsellers; free for students, $50/year with $25 setup fee.  Subscriptions are available for organizations.
    • United Kingdom: similar subscriptions to that of the US site
    • India: for subscription prices, check the website
    • Bookshare International/Without Borders for 70 countries; check the website for the countries, available books & cost
  • Daisy (Digital Accessible Information System) offers audio books, magazines & newspapers:
    • DAISY books can be heard on standalone DAISY players, computers using DAISY playback software, mobile phones, and MP3 players (with limited navigation). DAISY books can be distributed on a CD/DVD, memory card or through the Internet.
    • YouTube video shows what their digital books look like
    • Source of Daisy books for Daisy reader, computer, tablet or smartphone
    • At the bottom of this page, there’s a long list of software that plays Daisy books
  • Worldwide Overdrive: borrow e-books & audiobooks from local librarie
  • Many countries of the world BookBub: Free and inexpensive e-books covering many genres
Sue’s pages about books
Did we miss any? Please let us know if we did.

 

UPDATED: Top 10 Low Vision Aids for AMD

original post February 2016, updated March 2017

I found this article to be a good example of the kinds of non-computer low vision aids that are currently available but it is in no way all-inclusive. I’m guessing that these are products that company specializes in but are available elsewhere.  Check out our Resources page under Coping with Low Vision for more links to low vision aids.

– Linda

Top 10 Low Vision Aids for AMD 2017

Top 10 Low Vision Aids for AMD 2016

Highlight: Things You Didn’t Know About Your Peepers!

Thanks to Amy with Paul Gill Optician, Dublin, Ireland for this.

[Note: There’s a line in our disclaimer that says “The My Macular Degeneration Journal/ey website does not endorse any medical or professional service obtained through information provided on this site or any links to this site.”]

Age-Related Macular Degeneration (AMD or ARMD) has become a leading cause of sight loss in most countries including the US and the UK. This disease is a deterioration of the macula, a yellow-pigmented structure at the back of the eye, which enables us to see color and gives us our sharp vision. In this infographic from Paul Gill Optician, you see the UK statistics as well as “15 Eye-Opening Stats You Didn’t Know About Your Peepers”.

A 2010 survey reported that in the US, 2.07 millions were suffering from advanced Age-Related Macular Degeneration and it is expected to increase to 5.44 million in 2050 (statistics are from the National Eye Institute). Learning more facts about our eyes can help us to protect them better.

Highlight: Here’s a GREAT website especially for those with wet AMD

Lin/Linda here: Every once in a while I find a website and/or Facebook page that stands out.  Here’s one of those.

The website and Facebook page are called The Science of AMD: Our vision is to save your vision.  It is presented by the Amgiogenesis Foundation. Their headquarters are in Cambridge, Massachusetts.

Click here to go to the website. From there, you can connect to Facebook, Twitter or YouTube using icons in the upper right corner.

What is angiogenesis? From the website: “Angiogenesis is the process used by the body to grow blood vessels. In healthy adults, normal angiogenesis occurs in healing wounds and reproduction, but in all other situations, it is abnormal.”

It’s what causes wet AMD: “Wet AMD is caused by abnormal angiogenesis, when new vessels grow under the macula, disrupting the central region of the retina. These new blood vessels bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, impairing central vision. If left untreated, scar tissue can form, and central vision is irreversibly lost.” 

What’s so special about the website?
  • From a design standpoint, you can change the size of the font and the color of the font & background, you can choose a version of the site in any of 7 languages as depicted by flags, it’s easy to navigate.
  • Format of content includes printed text, videos, audio, graphics, PDF files and more.
  • This is not just for the US, there are resources available for other countries as well.
What information can I find there?

There’s a menu with Learn, Treat, Resources, Connect, About, Donate.  I suggest you start at Learn!   The emphasis is on how angiogenesis causes wet AMD and what can be done to treat it.

OK, now go and explore! Let me know what you think!