Category: Highlight

Sept. 2019 – Our Cub Reporter: Notes from an Awareness Program Page 2

by Joann Davis continued from Page 1

The final presentation by Dr. Mali was “New Treatments & Innovations for Macular Degeneration & Diabetic Eye Disease”.  

  1. Iluvien – Steroid implant for DME.  0.19mg fluocinolone acetonide intravitreal implant lasts for 3 years, provides daily treatment, and provides 15 or more letter improvement at 24 months.
  2. Brolucizumab  – Anti-VEGF  that is more powerful than existing treatments in controlling bleeding.  Studies show over 50% extend to 12 weeks. May get FDA approval this year.
  3. Abicipar Pegol has a new molecule – DARPin – and has allowed over 90% of patients to go to 12 weeks with stable vision.  May get FDA approval next year.
  4. Faricmab – another new molecule – Anti-VEGF & ANG-2 combo injection.  In trials has extended to 16 weeks.
  5. PDS – Port delivery with ranibizumab (Lucentis).  This is exciting, as it uses a refillable implant that lasts for 6 months.
  6. Stem Cells – Early trials for Wet and Dry AMD have proven safety.  Next trials will attempt to prove effectiveness in replacing damaged cells.
  7. Gene Therapy – This has been proven to work with other retinal conditions and is in early trials.  A virus modifies cells to produce proteins lacking due to gene not working properly. Approved for retinitis pigmentosa.  One goal is for your cells to make their own anti-VEGF protein.
  8. Future Home Monitoring – Home OCT for wet AMD to pinpoint need for next shot.  Prototype has been built and FDA approval could be in next 2-3 years.

Dr. Mali ended with an Infomercial for the Mali Eyeglass Holder for Slit Lamp Microscope and Table.  He invented this and you could use it at home to store your glasses anywhere you can use a clamp or Velcro to attach the eyeglass case.  Prices start at $19.99.

Back: Guest Author Pages

Sept. 2019 – Our Cub Reporter: Notes from an Awareness Program by Joann Davis

Your “Our Macular Degeneration Journey” Cub Reporter attended today’s Macular Degeneration Association “Eyes on Sight” seminar in Skokie, IL.  It was well-attended with sponsors offering resources for those with AMD. One big difference from the seminar I attended in 2018, is that ArcticDX is no longer a presenter, and the Founder of the Macular Degeneration Association now states that because the professional associations do not endorse genetic testing or zinc harm, the association can no longer endorse ArcticDX.  This seminar now follows the “Take AREDS2” advice for all with moderate dry AMD and seem to recommend it for all with AMD period.

Larry Hoffheimer  is the founder of the Macular Degeneration Association, a nonprofit which supports AMD Research and Education.  He is a former healthcare attorney and was diagnosed with Wet AMD a year ago.

The main speaker was Dr. Joshua Mali, Medical Director of the association, Larry’s doctor, and an ophthalmologist  and retinal specialist.  

Top 5 Things to Know about Macular Degeneration:

  1.  AMD is a growing problem and the leading cause of vision loss for those over 50 in the Western World.  Dr. Mali discussed the anatomy of the eye.
  2. AMD comes in two flavors – Dry and Wet.  Dry AMD is caused by drusen or “bumps” under the retina which are deposits of waste material.  10-20% of dry AMD patients get Wet AMD. Wet AMD is caused by abnormal blood vessels which grow under the retina – under the “bumps” – and cause scarring.  An AMD patient with 1 wet eye has a 50% chance of a 2nd wet eye.  Advanced dry or GA (Geographic atrophy) is a complete breakdown of the center of the retina and loss of tissue.  It looks like a divot in the top layer of the macular tissue. Wet AMD is responsible for most vision loss.
  3. Risk Factors are Age, Genetics & Smoking.  Smoking is the biggest risk factor we can control and we should avoid second hand smoke and vaping.  Other causes are being Caucasian, UV exposure, diet, antioxidants, cardiovascular disease, and high blood pressure.
  4. Treatment:  Treatment for Dry AMD consists of AREDS2 vitamins, Stop Smoking (also diet, exercise, sunglasses, blue blocking filters, and BS/BP/HPL control.)  Forseehome or Amsler Grid monitoring is very important. ForeseeHome is now reimbursed by Medicare and allows you to monitor more comprehensively at home.  When they did a study, they ended it early, because the benefits were so clear. In the NEI study, 94% of patients using ForeseeHome were able to keep their vision at 20/40 or better.  ForeseeHome uses AI and Telemedicine and it looks like a device for testing at the retina specialist’s office. You use a mouse to click on visual distortions and your doctor is instantly notified of any changes.  This must be prescribed by your doctor.
  5. Treatment for Wet AMD consists of Anti-VEGF Injections of Avastin, Lucentis & Eylea.  Treat and extend is the usual plan, starting with monthly injections.

We had an inspiring talk by a “Patient Ambassador” – Nancy – with Diabetic Macular Edema.  Nancy had a family full of diabetics and 8 kids. She took care of everyone else, weighed over 350 pounds, and almost quit her injections.  She has learned to take care of herself. Lost over 200 pounds, and her eyes are now stable.

Dr. Mali presented next on the Top 5 Things to Know about Diabetic Eye Disease.  Diabetic Eye Disease consists of Diabetic Retinopathy (DR – 21% of diabetics get this eventually) and Diabetic Macular Edema. (DME)

  1. Two Types of Diabetes – Type 1 and Type 2.  Sugar in the blood damages blood vessels all over the body, including the eyes.
  2. DR & DME are growing in prevalence as diabetes cases multiply.
  3. DR is caused by changes in blood vessels which cause fatty deposits and bleeding.  DME causes swelling and is the most common cause of vision loss among diabetics.
  4. DME Risk Factors are high blood sugar, blood pressure and cholesterol. 
  5. DME Treatment was formerly only lasers, but now DME treatment is the same as Wet AMD treatment – Anti-VEGF injections.  Some laser treatment is still used as well as steroid injections. DR treatment is PRP laser treatment, steroids, Anti-VEGF injections and surgery for advanced retinal detachment.
Next: Page 2 of Our Cub Reporter: Notes from an Awareness Program

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!

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 Continue reading “UPDATED: Are there eye drops instead of injections to treat wet AMD?”

Highlight: What is Myopic Macular Degeneration?

There are quite a few eye diseases that cause degeneration of the macula. The most common forms of macular degeneration are defined by age, at least in part:  1) Age-Related MD (AMD or ARMD) and 2) Juvenile MD (JMD) – several inherited and rare diseases that affect children and young adults including Stargardt’s Disease, Best Disease, and juvenile retinoschisis.

There is another form of macular degeneration called Myopic Macular Degeneration or Myopic Maculopathy.

What is myopia?

If you have trouble seeing things far away like road signs, your eye doctor may have said that means you are nearsighted because you can see things near better than far.   Some people call it being shortsighted.  The medical/optical term is myopia.

Top of diagram shows normal eye & vision. Below, myopic eye and vision.

Myopia occurs when the eyeball is too long relative to the focusing power of the cornea and lens of the eye (see diagram above). This causes light rays to focus at a point in front of the retina, rather than directly on its surface.   It can also be caused by the cornea and/or lens being too curved for the length of the eyeball. In some cases, myopia is due to a combination of these factors. Click here for more information.

There are different degrees of myopia: mild, moderate and high (also called pathological myopia).   The higher the degree, the higher chance of the degeneration of the macula.  Click here for some other risks for high myopia including retinal detachment, macular detachment, glaucoma and macular holes.

Myopic Macular Degeneration

People with high myopia/pathological myopia are at risk for damage to the macula from the stretching of it as the eyeball grows throughout life.  Here’s a good description of what happens: “As the eyeball grows and stretches, it may also cause an area of atrophy and/or cracks in the layers under the retina. These cracks can serve as conduits for abnormal blood vessels to grow under the retina. These vessels can hemorrhage and scar which is similar to what happens in wet macular degeneration. The onset of the nets of abnormal blood vessels, called Fuch’s spots, often occur in the 4th to 6th decades of life. Approximately 5% of pathological myopia patients develop Fuch’s spots, which lead to damage in the macular region of the eye and a subsequent loss of central vision.” From http://www.lowvision.org/Pathological%20Myopia.htm

Not all people who are myopic get Myopic Macular Degeneration.

Click here for an explanation of how the atrophy can occur as well as how the blood vessels grow into the macula.

The symptoms are similar to AMD & JMD as well.  Click here to learn more about them.  This article will take you to stories of people who have Myopic MD.

Click here for a first-hand account of the disease from a person with it.

Other links:

Myopic Macular Degeneration

American Academy of Ophthalmology Diagnosis and Treatment of CNV in Myopic Macular Degeneration

Degenerative Myopia

Treatment Patterns for Myopic Choroidal Neovascularization in the United States, article published July 2017 edition of AAO Journal (AAO is American Academy of Ophthalmologists).

 

 

Highlight: Does wet AMD start as dry?

There are differing opinions and interpretations of what those in the field of macular degeneration have learned.  The links below certainly don’t represent all views, of course, but are an example of some of what you will find.

The important point is that it is CRITICAL to get your eyes examined as recommended by your doctor and to monitor your vision between exams. Click here to find out how to do that.

From: http://www.webrn-maculardegeneration.com/macular-degeneration-stages.html

“Advanced AMD is either a break-down of light sensitive cells and supporting tissue in the central retinal area (advanced dry form), or the development of abnormal and fragile blood vessels under the retina (wet form).”

From: https://www.macular.org/dry-vs-wet-macular-degeneration

“About ten percent of all cases of Age-related Macular Degeneration become “Wet” AMD (typically a person has dry AMD first and progresses toward wet).”

From: https://nei.nih.gov/health/maculardegen/armd_facts

“There are three stages of AMD defined in part by the size and number of drusen under the retina. It is possible to have AMD in one eye only, or to have one eye with a later stage of AMD than the other.

Early AMD. Early AMD is diagnosed by the presence of medium-sized drusen, which are about the width of an average human hair. People with early AMD typically do not have vision loss.

Intermediate AMD. People with intermediate AMD typically have large drusen, pigment changes in the retina, or both. Again, these changes can only be detected during an eye exam. Intermediate AMD may cause some vision loss, but most people will not experience any symptoms.

Late AMD. In addition to drusen, people with late AMD have vision loss from damage to the macula. There are two types of late AMD:

In geographic atrophy (also called dry AMD), there is a gradual breakdown of the light-sensitive cells in the macula that convey visual information to the brain, and of the supporting tissue beneath the macula. These changes cause vision loss.

In neovascular AMD (also called wet AMD), abnormal blood vessels grow underneath the retina. (“Neovascular” literally means “new vessels.”) These vessels can leak fluid and blood, which may lead to swelling and damage of the macula. The damage may be rapid and severe, unlike the more gradual course of geographic atrophy. It is possible to have both geographic atrophy and neovascular AMD in the same eye, and either condition can appear first.”

From: http://www.avruc.com/macular-degeneration.php

“The macula is the central part of the retina and allows us to read fine print clearly and see colors vividly. It is this area of the retina that deteriorates in ARMD. There are 2 forms of ARMD. Everyone who has macular degeneration starts out with the dry type and 20% progress to the wet type over the course of a lifetime. “

From: http://www.youreyes.org/eyehealth/macular-degeneration

“Can the dry form turn into the wet form?
Yes. All people who had wet form AMD had the dry form first. 

The dry form can advance and cause vision loss without turning into the wet form. The dry form also can suddenly turn into the wet form, even during early stage AMD. There is no way to tell if or when the dry form will turn into the wet form.

Can advanced AMD be either the dry form or the wet form?
Yes. Both the wet form and the advanced dry form are considered advanced AMD. Vision loss occurs with either form. In most cases, only advanced AMD can cause vision loss. 

People who have advanced AMD in one eye are at especially high risk of developing advanced AMD in the other eye.”

Please see your doctor for regular exams and between exams, check your vision at home.

Highlight: I have drusen, does that mean I have macular degeneration?

Answers

 

“No, not necessarily. About 50% of the population will show hard drusen and almost 100% the population above 50 will have at least one druse, but many will not develop macular degeneration. An examination by your doctor will help you better understand your risk and what to do about treatment.”

 

“Not necessarily. Many individuals with some drusen do not go on to develop the visual symptoms of ARMD. From a clinical standpoint, drusen must attain a threshold in numbers, size, and shape for them to become a matter of concern to ophthalmologists.” This article goes on to talk about drusen at the various stages of AMD, the difference between hard and soft drusen and can you prevent, slow down or reverse AMD.

Article answers: what are drusen, types of drusen and questions for your doctor.

Highlight: Is there a connection between drugs taken for osteoporosis and wet AMD?

Click here for the article “A Troubling Link Between osteoporosis Drugs and Macular Degeneration.”   There MAY be a link but this article says “Despite the finding, Dr. Etminan, a pharmacological epidemiologist in the Department of Ophthalmology and Visual Science, cautions that it’s too soon for people to stop using the drugs or to avoid taking them, because this is the first study to show a link. Other large-scale studies using other patient databases need to be done before drawing firm conclusions.”

Other Articles

Click here for article “Oral Bisphosphonate Use Poses Risk of Wet AMD”

Click here for article “Examining the Link Between Osteoporosis Drugs and AMD”

Click here for article “Bone Meds Fosamax Boniva Linked to Blinding Macular Degeneration”

 

 

 

 

Update: Where can I get financial help for the shots I need for my wet AMD?

One of the members of our Facebook group shared with us information about a Patience Assistance Network (PAN) Foundation (US) which has helped her to pay for shots when her insurance would not pay. PAN’s purpose is to “help under-insured people with life-threatening, chronic and rare diseases get the medications and treatment they need by paying for their out-of-pocket costs and advocating for improved access and affordability.”  To qualify, you must be within their income guidelines and the medication must be on their list.  This program applies to more than just medications related to vision.

Click here to find out more about the PAN Foundation.  Their available funding fluctuations so you may have to check with them regularly.

Click here for a list of other Patient Support organizations including from the companies who make Lucentis and Avastin.

Click here for the company who makes Eylea.

Click here for a company in the US called GoodDays.

Click here for a list for assistance with the medications as well as with other expenses.

In the US, you may also qualify for Social Security Disability which would give you a monthly income and Medicare benefits.  Click here for that information.

Please contact me directly (light2sight5153@gmail.com) or leave a comment on this page if:

  • you live in the US and have experience with any of these organizations
  • you live outside the US and know of any similar organizations in your country

updated 12/13/2016

Time to Hibernate

Spring ahead. Fall back. In real-time we are one week past the return to standard time. It is dark out there.

Last week, one day after the clocks were turned back, there were only three students in hip hop! It was weird. Where was everyone?

My husband says I am eating red meat more than usual. I notice I can sleep ‘forever’. At 63 I recognize the symptoms. No big deal. I am getting ready to hibernate.

Wait. Hold on. Bears hibernate. Also skunks, groundhogs, chipmunks and some bats. And it would appear, some people, too.

NaturalNews.com reports there is a natural tendency to conserve energy in winter in their article Winter Hibernation and SAD May Be Normal Human Response. Researchers are just starting to think our evolutionary heritage contains the genes for hibernation. Less sunlight increases melatonin production. Melatonin is a sleep hormone; you know. There is even a decrease in the sex drive. If you do the math, a baby conceived in winter will be born in the fall, a time that resources are becoming scarce. Not a plan for infant survival.

Getting even more interesting, the article goes on to say fire was harnessed 400,000 years ago but the oldest human remains are a million years old. That means 600,000 very chilly years! Lots of natural selection time there. Those who were equipped to survive the cold survived.

Then, to add another interesting wrinkle, the article cites evidence Neanderthal DNA may have something to do with our ability to adapt to winter. (You didn’t really think they just went extinct; did you?)

There is historical evidence of cultural hibernation as well. Years ago entire villages in Russia would “close up shop”, only stirring enough to do what was absolutely necessary until the spring.

So, to get around to where I am supposed to be going with this, although it has been an interesting introduction to write, 20% of the people in those villages were said to suffer from some form of Seasonal Affective Disorder (SAD).

Catherine Zandonella writing for the Daily Mail (11/13/16) reported scientists are beginning to believe SAD is an atavistic form of hibernation. To translate that sentence a bit, atavistic means “relating to or characterized by reversion to something ancient or ancestral”. In other words, a throw back.

Seasonal affective disorder is a type of depression associated with the change in seasons.

There are major differences between SAD and other forms of depression. Those with SAD eat and may sleep excessively. Those with ‘traditional’ depression do the opposite.

The bottom line here is people who suffer from SAD may just be highly evolved and in tune with the natural world. They may be responding the way we were meant to respond in order to survive.

But there is a small problem. We are no longer expected to gather in our caves and sleep the winter away. Survival now involves a new set of skills. We are supposed to be bright-eyed and ready to go in all seasons.

Solution? Well, SAD responds to full spectrum lighting…. which can negatively affect AMD. Ooops.

Looks like I am back on topic. Continued next page.

written 11/14/2016

Continue reading “Time to Hibernate”

Need to Be Needed

Hi, how is everyone?

I am doing alright. Wasting a beautiful Sunday. I need to actually DO something!

…..OK. Back again. I have gotten the plants in from ‘summer vacation’ on the deck, cleaned a bathroom and put in a load of laundry. I hate housework but I have to say one thing about it: there is always something small to do to get you started. Breaks through the inertia.

After I cleaned a little, I took the Beastie Baby to the ‘beach’. Just about her favorite thing in life is going for a walk. She loves her Mommy at least in part because I do these things for her.

Since I am no longer driving, walkies have become either neighborhood strolls or ‘adventures’ taken according to her Daddy’s schedule and whim. I have gotten a little distressed at times because I don’t feel as if I am doing good enough a job in satisfying the Baby’s needs. We used to be able to go adventuring nearly every evening.

People say they what to be independent and have no responsibilities to others, but I would say that is pretty much untrue. I think being needed and being able to do for others are pretty basic desires in people.

I looked for scholarly articles on being needed and I got pretty much nothing. There were articles about being pathologically needy. There was even an article talking about how some counselor tried to convince an elderly man he was not “supposed to” miss feeling as if he were needed and contributing. Really????? What was all that about?

Since most of the articles talked about how ‘bad’ it was to want to be needed, I started to think I was wrong. Then I recovered my wits ? and decided, of course I am not wrong! My terms were wrong!

I started looking for things that talked about the desire to be useful and only got slightly further. There just does not seem to be a lot of scientific information on the desire to be useful. Sort of surprised me because I consider being able to do for others a great way to build social relationships and self-esteem.

I finally ended up looking at philosophy and religion. It may not be scientifically validated but I tend to believe what this guy has to say. Specifically, he remarked he starts every day with a simple prayer: to be useful to others. He says he has a desire to be helpful, to assist others. He sees it as a way to serve humanity. That is sort of his job.

Who is he? Tenzin Gyatso, the 14th Dalai Lama. He is believed to be the incarnation of compassion, literally.

Not bad company over all. And by the way, the Dalai Lama is 81 years old( 7/6/1935). Who says older (and slightly the worse for wear) people should not want to be useful? Continue reading “Need to Be Needed”

Memories

[We haven’t done a song shout out for awhile so here’s one: Memories – Elvis Presley]

I admit it: I got a little confused about exactly how much I was spending in Iceland. I got particularly concerned when I got home and discovered a message from a tradesman I had written a large check to before we left. OMG. Did I spend so much on vacation that the check bounced?

Fortunately, the check had not bounced. I had made a typical (for me) low vision error and written the check for the wrong amount. I still have money, praise be.

It got me thinking, though. I have been feeling a bit entitled these days. Part of the reason we did Iceland this year and not next was my vision. I feel entitled to go and see places. I may be on a countdown! I would like to have these experiences now while I can still see things.

Intellectually I know I have five other senses with which to explore the world, but emotionally? Vision is the one that matters to me now. Will this feeling I NEED to have some of these experiences immediately lead me to some sort of ruin?

On the positive side, awareness is the first step towards solving any problem and I am aware. I am not going to go on a wild spending spree and not be aware of what is happening. Awareness would lead to monitoring and regulating what I am doing. My executive functioning skills are decent.

Even if I do spend it is a positive in that I want to blow my money on the ‘right’ things to increase my long-term happiness. I want to buy experiences.

Researchers at San Francisco University discovered people who spend money on experiences rather than things were happier and more often feet the money was well spent. Part of the reason for this is you get used to possessions and the thrill is gone. But, other reasons have to do with characteristics of experiences themselves.

For one thing, we are the sum of our experiences. Experiences become part of you and help to shape how you see yourself and how others see you.

Also, many experiences are shared. Common experiences and memories help to keep people together and relationships healthy.

Another reason for investing in experiences is even negative experiences can become positive memories. I would tell my nephews the disasters make the best stories and I still believe it. Take it from the woman who was almost electrocuted by her garden hose!

While I have been talking about expensive trips, experiences can be pretty modest and still have a lasting effect on your level of happiness. A collection of three or  four, modest experiences may provide just as much pleasure as one, big experience.

It may also be prudent to rent or borrow the means to have your experiences. Financially my husband and I are OK. However, I have been fortunate enough to know people who are financially comfortable and willing to share. For example, a friend sent me a photo of a group of us at a 2006 Earth, Wind and Fire concert in Atlantic City. Our good time was made possible because we were invited to stay in friends’ beach house.

So, yeah. Right now the checking account has taken a pretty good hit. ($7 slice of carrot cake ?!?!? OMG). Glad we did the trip, though. Iceland is amazing and my husband and I have some good memories of experiencing it together.

I absolutely want to have more ‘adventures’ both before and hopefully after my vision really goes to sh**. For the next few months they just need to be more modest.

That does not mean I cannot dream and plan, however. I forgot to mention experiences also create happiness through anticipation of the experience. My husband already has started thinking about next summer. Something a little more economical like a Central American cruise. No $7 cake slices involved!

What memories do you want to create? Continue reading “Memories”

I Am Woman, Hear Me Roar!

Dependence: the state of reliance on or being controlled by someone or something else. What a pain in the posterior that is!

62 years – or at least from my early 20s to 62 – I was my own woman. Made my own decisions. Kept my own schedule. Went where I wanted to go. All of that is now changed.

Now there is ‘another country’ being heard from. Or maybe even two or three more. I hate it.

What gives these people the right to tell me – or try to tell me – what to do? My dependence does. I now need them.

I am being given opinions about what I ‘need’ and don’t need to do. I ‘need’ to go to work but I don’t need to go to exercise classes. Oh, really??? You may not feel the need to take me but I will get there even if I have to walk. Please don’t tell me what I need. You don’t live in here. I do.

I am having trouble finding anything much on the web about sudden dependence. The common parlance apparently considers dependence to be an addictions issue! However, one article contained the word ‘power’ and that word rang true.

I resent the loss of my power! I resent having power taken from me and I want it back!

Another phrase that rang true was ‘loss of identity’. This is not me. I have likes and dislikes. I have opinions. If I did not like something before I would get in my car and drive away. Why do I have to stay now? I don’t do things this way!

OK. My resentment can make me a bit of a witch. The people whom I am dependent upon have rights too. They don’t have to help me and, truth be told, they are not the ones taking away my independence. It is circumstance. However, if you don’t want or are unable to help me be myself and maintain my power, say so.

Lead, follow or get the hell out of my way. I want MY life and I want MY identity and I will do what I can to try to keep them. Don’t tell me what I ‘need’ to do! If I fail, I have failed on my own terms.

While I am not in the habit of citing people who have no last name, I found something related written by James D. for www.keepinspiring.me. James’s take on things is that lack of control in your life can lead to depression. I quote him because I have seen the same finding other places. James suggests you take steps to control those things in your life that you are capable of controlling. Even being able to control a few things is helpful.

So I keep on keeping on. I will find ways to be me as long as I can. I will find a way to keep at least some of my power. Dependence? It stinks! Continue reading “I Am Woman, Hear Me Roar!”

SightSEEing

I think I have always known this about myself. However, planning this trip and doing the ‘blind travel’ research has really brought it into clear perspective. Specifically, I am a vision snob.

How did I figure it out? To begin with, 10 days in Iceland is expensive! Afford it? Yes, but it would have been easier with more time to save.  Why this year? The original plan was a Canadian maritime cruise that was half of the expense.

The reason we decided to do the Iceland trip this year is because I want to SEE Iceland. Next year I may not be able to.

I admit I have been a bit perplexed by all of the blogs and other asundry offerings on blind travel. What is the purpose of going sight-seeing when you cannot see the sights? Like I said: vision snob.

Since there are accursed many of these ‘blind travel’ offerings there has to be something about traveling without vision. I mean, some of these people are not just a little fuzzy; they are big B blind! What do they get out of it?

I found a post by a woman with very low vision. She was talking about traveling in California. The post was entitled Traveling Blind: A Sensory Experience and that title pretty much says it all. The author, as well as some other blog writers on the subject, talked not about seeing the sights but about soaking up the experience. She spoke of slowing down and being truly mindful (there is that word again!) of everything around you. She spoke of the quality of the air and the differing songs of the birds. She talked about the proprioception experience of riding a San Francisco trolley car. In short, she spoke of the whole person experience of being in a new environment.

The author also talked about being overwhelmed and frustrated on other trips. It sort of sounded like these were ‘sightseeing’ trips. You know, the bus drives past and gives you a ‘photo opportunity’ of something beautiful or historic or awe-inspiring.

If this is Tuesday, this must be Belgium. Too fast paced and definitely utilizing the wrong sense for someone visually impaired.

So, apparently the message is you can enjoy new experiences through your other, five senses (including proprioception) but you have to slow down and experience it first. Sort of a new concept for a vision snob but unless the clinical trials do great things, it might be the way of my future.

I gave it some thought this afternoon. My friend and her husband had me kayaking. Maybe the last time for the summer. After fighting my way up river for about an hour, I turned around and floated back down. The sun was warm, but not too warm. The breeze played over my skin. My hands trailed in the water and I could feel the water passing through my fingers. I heard ducks and geese and a kingfisher calling. Not too bad.

Now I admit I am far from ready to give up my vision – my monocular allowed me to see that white speck on the shore was an egret. Score! – but experiencing my time on the river through my other senses did have some positives.

Maybe these ‘blind travel’ people have something after all.

The author ended her piece with a quote that I am going to steal:

“Certainly travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living.”
Mary Ritter Beard

Continue reading “SightSEEing”

Updated: Is there a relationship between cataracts and macular degeneration?

Disclaimer: I’m NOT a medical person & this isn’t advice. I do research on topics & summarize what I find to try to make it more understandable. –Linda…

What is a cataract?

“A cataract is a cloudy or opaque area in the normally clear lens of the eye. Depending upon its size and location, it can interfere with normal vision. Most cataracts develop in people over age 55, but they occasionally occur in infants and young children. Usually cataracts develop in both eyes, but one may be worse than the other.” From Glossary of Eye and Vision Conditions

Here’s a good video from the National Eye Institute “Cataracts”

Here’s a very comprehensive website section with not only statistics from the UK but also sections on what they are, what medications are used with them, and where you can get more information.

Cataract removal in someone with AMD

Question is how much of one’s poor vision is from the cataract & how much from the AMD? Depends on the severity of the cataract & stage of the AMD.

Possible Benefits

From Cataracts & Age-Related Macular Degeneration

  • if it’s mild AMD, cataract removal may improve acuity even of central vision.
  • if more advanced AMD, removal may help with color discrimination, contrast, clarity or peripheral vision.
  • if it’s wet AMD which hasn’t been stabilized, see ‘Risks’ below.
  • if it’s a thick cataract that prevents the doctor from seeing the macula clearly especially if there’s a high risk for wet AMD, removal may aid the doctor in accurate diagnosis of condition of the macula.
Risks of cataract removal in someone with AMD

Basically the same as those without AMD except when the AMD is not stabilized – more below.  In general, it’s considered to be a low-risk procedure.

Considerations:
  • the natural lens (that’s what turns yellow and is called a cataract) filters blue light but you can get an IOL (Intraocular Lens) that will help to filter some of it out (no evidence this reduces vision).
  • risk of Posterior Vitreous Detachment (PVD) which can result in floaters or retinal holes or retinal detachments (holes or detachments can occur in the macula).
  • inflammation related to AMD. Solution: pre-op NSAIDS (anti-inflammatories).
    • From Cataract Surgery in the Patient with AMD
      “Additionally, growing evidence supports a pathogenic role for inflammation in AMD, and the normal inflammatory response that accompanies cataract surgery, even when uncomplicated, may be deleterious to at-risk eyes. However, epidemiologic studies to date have failed to prove definitively that cataract surgery is associated with AMD progression. “
    • From Cataract Surgery in the Patient with AMD “In summary, in the patient with a visually significant cataract, AMD should not be considered a contraindication to cataract surgery, and surgery need not be delayed for fear of causing advanced AMD. Factors such as IOL selection and peri-operative management may optimize visual outcome and reduce the risk of AMD progression.

Other references:

Cataracts and Macular Degeneration from WebRN-MacularDegeneration.com

The Impact of Cataract Surgery on Pre-existing Retinal Disease

updated 1/27/2017

Bittersweet

We leave for Iceland Tuesday. Before we leave we need to close the pool. So today I came home and jumped right in. There is something about realizing something is coming to an end that makes that something more precious. Bittersweet.

This afternoon I got a call from my boss/colleague/friend at the office. She has always owned our therapy dogs. This last one, a golden retriever, and I had a ‘working’ relationship. I loved him. He loved me. Worked out just fine that way.

For the past two months ‘our’ dog was fighting liver cancer. Today he lost the fight and was put down. My friend called before they left so he could hear my voice one more time. Break my heart. Bittersweet.

Things come to an end. Some of you know this better than I. Often we can see that end coming. Talking to a dying dog on my cell phone was not easy. Am I glad she called? Yep. Bittersweet.

Live life like Maxwell House coffee: “good to the last drop.”

“Good bye, Brucie. Aunt Sue loves you.”

Now I am going back into the pool.

Written August 30, 2016

Continue reading “Bittersweet”

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