macular degeneration, macular, diagnosis macular degeneration research – My Macular Degeneration Journey/Journal

Serious Work

ARVO is the Association for Research in Vision and Ophthalmology. According to its website it is the largest and most respected eye and vision organization with over 12,000 members from 75 countries.

Basically, ARVO is hot stuff in the vision world.

The 2017 ARVO conference will be at the Baltimore Convention Center starting May 7. If we don’t get this page published for another four months, the 2018 conference is in Honolulu. We could always go there!?

If you cannot get to Oahu, the ‘Big Island’, for next year, you can always view abstracts of presentations from past ARVO conferences online. There are sections on a variety of eye problems, one of them being retinal concerns.

The first abstract included under retina from 2016 talked about how damaging scar tissue in the eye can be for vision. While anti-VEGF drugs serve to halt the growth of extra blood vessels, they do not prevent the growth of scar tissue. Researchers are working on producing antibodies that will react with the connective tissue growth factor in a protein that contributes to scar tissue formation. This research is still in the (real) rat labs, but may someday be given to wet AMD people with bleeds. Remember bleeds can lead to scars.

The second one mentioned – oops, actually the third – talked about the lack of plasma diagnostic markers for AMD. Plasma diagnostic markers can be found in blood. Someday there may be a blood test that will allow us to determine who is going to start with wet AMD and prevent the growth of new blood vessels even before it starts.

Other abstracts included in the retina section talked about ways of improving ‘bionic eyes’ to provide more details in the images and, yet others, talked about the research being done with stem cells. While the stem cell, clinical trials I am interested in are dry AMD only, there have also been phase 1 clinicals using wet AMD patients. The researcher there, Zheng Qin Yin, reported vision improvement just as was seen in phase 1 clinicals with stem cells and dry AMD. Bonus!

In some studies the stem cell source was embryonic but in other studies they are using bone marrow stem cells. The bone marrow people are also getting promising results.

Never heard of subretinal fibrosis, but apparently someone is studying it! Philipp Roberts to be exact. Not sure why Philipp has two P’s but that is the way he is listed. Anyway……Philipp tells us subretinal fibrosis is the end stage of wet AMD. Apparently you cannot tell the difference between “regular” neovascular tissue and subretinal fibroid tissue with standard imaging techniques. Philipp is working on that.

Basically, there is some serious work being done to hopefully get us out of this mess. I have not said this for a while but I can say it here: now really is the best time in history to be going blind.

And if you are in Baltimore the week of May 7th? Thank a vision researcher for his or her effort. They should be easy to find. The website predicts 11,000 in attendance!

written April 9th, 2017

Continue reading “Serious Work”

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News: July 28-29, 2016

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.