Category: News

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!

News: Stem Cell Clinical Trials in the UK

For Those in the UK

Click here for an article about a UK patient at Moorfields Eye Hospital in London as part of The London Project to Cure Blindness.  Click here for the press release dated September 28, 2015, that describes the ongoing project.  The patients in this study have wet AMD.  This is apparently the first study of its type in the UK.

Click here for more information about the stem cell research trials including 2 videos and a graphic illustration of where the stem cells are implanted.

Want to know more about what stem cells are, where they come from, and how they are used?

For more information about stem cell research, click here to read Sue’s page where I’ve placed quite a few links to helpful articles.  There’s also a link to the clinical trials website for the US.

For more information

News: Stem Cell Treatments – Successes, Concerns, US Legislation

 

News: Summary of AMD Research & Developments for past 12 months – June 2016

Here’s an excellent summary of the research and developments in the field of AMD.  It’s done by Dan Roberts of mdsupport.org which is a site I highly recommend for both information and support.

Click here for the audio with slides presentation. You don’t have to be able to see the slides, the audio is very clear.

Click here for a transcript of the presentation.

 

News: Links to current articles about AMD 6/3/2016

I have a pet peeve (if you’ve joined our Facebook group, you’ve heard this–by the way, if you have NOT joined us, why not??  There’s a lot of good information and conversation): I hate it when I’m doing research and I find something very interesting but there is no date!  There’s a lot of information out there about AMD but some of it is really really out of date.

Imagine my joy in finding a list of articles with dates!   These articles are ones published by the website HealthDay and have been written by several of their reporters who appear to keep up with the newest information.  They list their sources and at least for the 2016 and 2015 articles, they are using the most current information from reputable sources.  I’m working on a new webpage of our own that will keep track of current news.

Click here for Macular Degeneration News from HealthDay.

News: We have a Facebook page!

I’m pleased to announce that I’ve set up a Facebook group that will be connected to our website. The purpose of the group is to allow us to talk about topics of importance to us, ask questions, and share information.

I’ve found 48 Facebook pages/groups related to blindness, low-vision and AMD. These include most of the big AMD organizations and they post regularly about what’s new in research, treatments, coping skills, etc. In addition to being the administrator of the group, I’ll be checking these AMD sources regularly & I’ll share the best of their posts.

Sue will not be in the group. She’s not on Facebook and isn’t interested in joining because her time is limited but I’ll be able to pass information from her & to her.

You must have a personal Facebook page to join the group. You can still follow the website by email and you will still get the email that I send out announcing a new page from Sue and a new blog post from me. I will share many of the Facebook ‘goodies’ we find with the email followers as I have time.

The biggest advantage with Facebook, in my opinion, is that we can interact with each other. Several people have told me that they don’t know anyone else with AMD & that they feel very isolated.

Here’s the name of our group:

My Macular Degeneration Journey/al

I recommend that the first time you go to the group, use this link because there are several matches to the group name & it may be hard to find initially:
http://www.facebook.com/groups/mymacularjournal/

I’ve made it a closed group which means anyone can find it but you need to ask to join and wait until I approve you. I know that privacy is a big concern for us all. Unfortunately, there’s no way that I can prevent others from seeing your name listed as a member in the group. If your personal page security is set properly, they can’t go to your page see all of your info.

Part of my responsibility as a group administrator is to protect our privacy, prevent people from posting advertisements and to make sure each one of us is treated with respect and dignity. We can agree to disagree, that’s fine. We just need to be polite about it.

You can share this Facebook group name with others. Tell them that if I don’t approve them in a timely manner to let you know. I’ll need their Facebook name. You can email me or they can email me directly (please tell them to mention you are a follower of the website).

I will also be publishing the Facebook group name on the website which means that a person doesn’t have to be an email follower to join the group.

My email address is
light2sight5153@gmail.com

Hope to see you there!

News: Surgery for Wet AMD

 April 2016

We can’t transplant the retina (yet) but researchers in Italy have had success replacing damaged tissue below the retina in the choroid layer with tissue from the patient because it has less chance of being rejected. Tissue taken from the patient and moved to the choroid is called autologous choroidal transplantation.

Click here to review ‘the science stuff’ regarding how the eye is structured.

Here are 2 articles about the procedure.

Click here for a more technically-oriented article in Ocular Surgery News.

Click here for an easier to read version in WebRN.

 

News: Smoking Makes Your Vision Poor Shows Research

April 11, 2016

Article from India:

With a surge in eye-related diseases in India, Ophthalmologist have said smoking is emerging as one of the major reasons behind vision-loss among patients. However, only 10-20 percent people are aware of it.

According to the doctors, several studies have shown that smoking increases the risk of age-related macular degeneration, cataract, glaucoma, diabetic retinopathy and dry eye syndrome.

Click here to read the entire article.

 

 

News: The App That Helps Blind People See

3/21/2016 A video & article about an app called Aipoly Vision which has been tested for object identification.  That means the person points their iPhone or iPad at an object and they will hear the name of it if it’s in the database of 1,000 objects (they’re working to expand that to 5,000 objects).  It uses the iPhone’s built-in accessibility functions.

Click here to learn more about this.  It also talks about another app to read text such as restaurant menus.

The Aipoly Vision app is free from the App Store or iTunes.

News: Apple releases new feature for iPhone that will help people with low vision & others

  • March 2016: Apple just released a new feature for people with low vision & those of us who want to prevent it.  Research shows that blue light from various sources (see below for more info) can adversely affect our vision.  Also, there is some evidence that the blue light from our mobile devices when used at night will make it more difficult to fall asleep.  The new feature called Night Shift allows you to adjust the screen on your iPhone so that it is ‘warmer’.  Read more about it.  You need to update your iPhone’s IOS to at least 9.3 first.