Always Learning More and More

Moving right along with the article I am reading (in Webvision’s Age-Related Macular Degeneration), I am finding a lot of new vocabulary and abbreviations. Have you heard of PEDs, for example? PEDs are not nylon footies. They are pigment epithelial detachments. They happen when a bunch of drusen join forces and push up the RPE layer of your eye. Since the RPEs are under the retina and need to be in contact with Bruch’s membrane in order to take care of the photoreceptors, having them jacked up is not a good thing.

There is more and more information suggesting Bruch’s membrane is not totally blameless in this whole debacle. I am not going to pretend to understand it but there is evidence structural and biochemical differences in Bruch’s membrane occur in those with AMD but not in people who do not have the disorder. It may not be all the fault of the RPEs.

Recently I have been seeing the terms classic, predominantly classic and occult to describe different forms of wet AMD. They are mentioned in the article I am reading but not well defined.

According to the American Macular Degeneration Foundation the terms classic, predominantly classic and occult describe the choroidal neovascularization (read “formation of new blood vessels in an inner layer of your eyeball”) that happens in wet AMD. Classic choroidal neovasculazation is characterized by well-defined boundaries. Average visual acuity is between 20/ 250 and 20/400.

Occult CNV sounds like it should be scary but it is actually the more benign. Occult lesions are not as well-defined as classic ones. They tend to leak less and average visual acuity is between 20/80 and 20/200. If given a choice, I would take this one!

Predominantly classic is, as it sounds, a mixed type. The other designation for this type is minimal classic.

According to Joachim Wachtin in Classical Choroid Neovascularization CNVs can also be classified by where they can be found in relation to the fovea. Some of them are directly under the fovea and are called subfoveal. Those that are extremely close to the fovea are called juxtafoveal and the ones that are farther away are called extrafoveal.

Like I said, lots of new vocabulary coming our way! But I do believe that, when in a strange land, you should always learn a few basic phrases. These are some basic phrases in the land of wet AMD.

My article takes a serious detour into science babble and I truly don’t understand much. Glaze over time! That means I am going to stop sharing info from it.

Hope these scraps of information fit into your ‘puzzle’ somehow. One of these days we will have gathered enough pieces of knowledge to actually figure out what the picture is!

In the meantime, keep on learning. In the famous words of Schoolhouse Rock, “….because knowledge is power!” Gather knowledge. Be powerful. Continue reading “Always Learning More and More”

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.

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

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

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

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

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

This website is divided into 4 parts:

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

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

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

Courses Coming Soon!

Thanks!

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