Sue’s New Page 1/1/2017

Happy New Year!  We hope that 2017 is a HOPEFUL and healthy year for you and yours.

This page certainly wasn’t planned to be published today considering that Sue wrote this in August, but many people at the end of the year are thinking of starting fresh.  I subscribe to some newsletters related to ‘all things home’ from decorating to cooking – you name it.  I just got a newsletter that talks about how to clean and organize the house to start the new year.   Sue talks about the challenges of doing that with low vision.

Living a Clean Life

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).

 

 

Sue’s New Page 12/30/2016

What do you do when you see someone who obviously has vision problems struggling with something?  For instance, you see an elderly woman wearing a pair of inexpensive sunglasses and carrying a regular wooden cane.  She’s ‘stomping’ the cane up and down in front of her as if it were a ‘seeing eye’ cane.  This is what Sue watched at Cracker Barrel restaurant.

Charity Starts at Home

Sue’s New Page 12/29/2016

I like it when I can find titles that relate to songs and this one was done by Simon and Garfunkel and covered by others.  I thought there was no direct relationship between the lyrics and Sue’s topic of resilience but I looked closer.  Do you think there is?

“And I think it’s gonna be all right
Yeah, the worst is over now
The mornin’ sun is shinin’ like a red rubber ball”

Red Rubber Ball

 

 

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: Can I turn my TV Into a magnifier?

This article describes what might be a good and inexpensive option for many of you.

TV Magnifier

The device is only $65.49 at Amazon right now (no, we still don’t get any money from referrals).

Carson ezRead Digital Magnifiers – Transforms your Television into an Electronic Reading Aide

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.

Sue’s New Page 12/21/2016

I can’t believe Sue wrote this in August!  We started to publish a page every other day because Sue was afraid she’d run out of things to write about but it looks like that’s NOT going to happen. ::grin::  Perhaps it’s time to speed up so that we aren’t so far behind?  Maybe that should be our resolution for 2017!  Anyway, in August she was back doing something she loves to do and that is ride her bike.  It will be a few more months till she’s doing that again but in the meantime, for today’s page she’s…

Back in the Saddle

Sue’s New Page 12/19/2016

For those of you who have been following Sue’s journal pages from the beginning (February 2016), you know that she started out her journey with AMD not working and having a difficult time maintaining her ‘old normal’ routine.  Through her determination and with the help of trained vision therapists and their ‘toys’, she has a ‘new normal’ routine.

A Day in the Life

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

Sue’s New Page 12/11/2016

One of Sue’s goals is to be able to get across the street on her bike.   She’d told the O&M guy that and so she was surprised when he brought her a white cane because she doesn’t need it.  Rather than reject the cane and not participate in the instruction, she’s learned quite a bit about its history and how it can help her should she need it in the future.

Have Cane Will Travel