Author: Linda Moore

Everyone who has wet AMD (and those who fear they will develop it) hopes that there will be eye drops instead of injections. Sue reports on a recent article about the 1 / 2 clinical trial with PAN 90806 which is a once-a-day eye drop for wet AMD. The article talks about the drops reducing the “injection burden” which means that they hope eye drops will prevent people from stopping the treatment as many do with the anti-VEGF injections.  Sue asks…

Why Drop Out?

If you missed it, here’s a post Highlight: Summary of Research and Development 2018.

 

Sue and I believe that people generally mean well. Sometimes, though, you hear what is said to you or others with vision impairment, and you wonder where they learned what they said. For instance,  how many times have you been told…

You Don’t Look Blind

Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

Sue’s Musings: Then and Now – Part 2 – 1/20/2018

Sue’s Musings Then and Now – Part 3 – 1/24/2018

Sue’s Musings Then and Now – Part 4 – 1/25/2018

 

Some days are better than others. On this particular day, Sue found many things that weren’t going her way. She’s become dependent on her CCTV and it is broken so she’s on a quest to get a temporary replacement.  Some days we have…

Patience…or Not

Spoiler Alert – why should you read Sue’s Journal Pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

We’ve compiled the first part of a series of Sue’s Best Pages.  If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

 

It’s Sue’s last day of working at the school where she’s been for 40 years.  I’ve started a new job in a field I knew nothing about.   It’s not the first time we’ve “leaped” into something and then asked…

Now What?

We love when people share their stories with us.

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page or pages.  Hearing the voices of others reminds us that we are not alone!

Send your story or advice to me at light2sight5153@gmail.com.

Research continues to look for ways to make the injections for wet AMD more effective and to last longer between them.   Sue reports on a study that uses x-rays/sealed radiation with anti-VEGF medications to produce…

Combination Therapies

Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

Sue’s Musings: Then and Now – Part 2 – 1/20/2018

Sue’s Musings Then and Now – Part 3 – 1/24/2018

Sue’s Musings Then and Now – Part 4 – 1/25/2018

Over 2 years ago, Sue looked for promising AMD stem cell research and found Dr. Carl Regillo at Wills Eye Hospital in Philadelphia.  She’s seen him several times and just had an appointment with him. Unfortunately…

The Waiting Game Continues

If you missed it, here’s a post Highlight: Summary of Research and Development 2018.

ARVO is the Association for Research in Vision and Ophthalmology and they have yearly conventions.  Sue shares some of what was discussed this year. They were lucky to get to Hawaii before the terrible volcanic activity started.  It’s no surprise they refer to this conference as the…

Hawaiian Eye

Did you know that our website has a LONG list of resources?  Here are the topics from the Resources page:

• Links We Like
• See what vision is like at the various stages of AMD
• What is AMD?
• Glossary
• Websites devoted to AMD
• Websites containing information about AMD
• Support groups
• Where to find services
• Books & reading materials
• Videos
• Personal stories of living with AMD
• Online newsletters
• What is Stargardt’s Disease?
• Science Stuff
• Symptoms
• Possible causes/contributing factors
• Treatments
• Research/clinical trials
  • How can I become part of a clinical trial?
• Coping with vision loss
• Self-maintenance/ self-care
• More to come…

If you find a link that gets to a ‘page not found’, please let me know.  I should be checking them regularly but to be honest, I don’t have the time!

This isn’t a new topic but one that is worth repeating as many times as it takes to convey the message.  Earlier in May, the FDA filed an injunction against three stem cell clinics whose treatments were not FDA approved.  You’ve probably seen the article about 3 women who were ‘blinded’ by stem cell treatments that they paid for.  Sue reminds us again why we tell you…

Please Be Cautious

It’s over 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

Sue had a long holiday weekend to work on her ‘homework’ from a recent conference and she writes about how a text-to-speech app helped her with that. She also continues to deal with the health insurance issues she has as she approaches 65.  You know how busy she is and how important are her…

Catch-Up Days

Tell Your Story

One of our favorite blogs is called Girl Gone Blind written by a woman who found out at age 50 that she has Leber’s Hereditary Optic Neuropathy (LHON), a rare genetic condition causing sudden vision loss. It affects 1 in 50,000 people.  She has a website and a Facebook page so check her out.

She shared a recent page called 5 Benefits Of Telling Your Sight Loss Story.  Here are the headings for those 5 benefits but we hope you go to the page to read what she has written:

1) Your Story Educates And Increases Awareness.

2) Your Story Will Spark Connection With Others.

3) Your Story Is Worth Writing About.

4) Your Story Removes The Elephant In The Room.

5) Your Story Paves The Way For Others.

We encourage you to write your story and send it to us to include on our Guest Authors page.  You write the story, send it to me at light2sight5153@gmail.com and I’ll do the rest.

I recently shared a page by Dan Roberts that updates us on the status of research and developments in the field of AMD.  Sue and I agree with his statement, “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.” The monsters go away when we…

Shine a Light Under the Bed

Finding Services – US & Canada

There are lots of services available for those with vision impairment.  This is a GREAT website for those in the US and Canada –> Browse the AFB Directory of Services for People Who Are Blind or Visually Impaired.  In the right-hand column of the page, you will see ‘Narrow Your Search’ which you can use to search by state.  Here’s another page for those in the US–>U.S. Agencies, Centers, Organizations, and Societies.

Finding Services – UK

The Macular Society has services that you can find on their website–>Macular Society.  The RNIB is another organization that offers services in the UK–>Our Services.

Finding Services – International

There are organizations that offer support around the world–>International Agencies, Centers, Organizations, and Societies.

Have a Resource to Add?

Do you have a resource that can help our readers find services in their area?  Please tell us about it in the comments section.  Or email me at light2sight5153@gmail.com. Thanks!