macular degeneration

Stargardts is Ravaging My Retina

What does macular degeneration look like?

Show and tell with my ophthalmologist

In 1998, I was diagnosed with Stargardts Disease. Since then, as my vision degraded, I have been getting annual checkups. The first images of my retina were taken with a Nicon camera. (Do you remember film? So much has changed in 26 years.) Last week, with my phone, I took video of the appointment with my ophthalmologist. Above is an excerpt of the doctor explaining one set of electronic scan.* 

For comparison, below are scans showing a healthy retina and mine in 1999 and 2021. The black areas are dead cells caused by the buildup of toxic byproducts.**

Retina Scans

Comparing the 2021 scans to the scans in the video, there does not appear to be much difference. This was surprising to me. I feel my sight is much worse. Three weeks ago, I was at a park that I hadn’t visited since last spring. Looking out across the lake, I couldn’t make out what was on the other shore. Last year I could.

Knowing my annual eye appointment was near, I was determined to see the scans and compare them to earlier ones. The degeneration appears to be slow, but not in my comprehension of visual information. What will the next year bring?

*See also Diagnosis and Management of Stargardt Disease

**The buildup is caused by variants in the ABCA4 gene, which prevents the ABCA4 protein from removing these toxic byproducts. The ABCA4 protein is involved in transporting a retinal phospholipid compound that helps remove potentially toxic compounds from photoreceptor cells.  –National Eye Institute

A link to my 2019 exam with my Columbia Presbyterian ophthalmologist in NYC .


My Big VIP Adventure

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M ore than 20 years ago, I was diagnosed with late onset Stargardt Disease. It is a progressive form of macular degeneration where the build up of Vitamin A kills retina cells leading to central vision loss. I cannot read a menu or a book. By comparison my peripheral vision is absolutely amazing.

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How I see the Amsler Grid

This blog is my journal of how I am adjusting as a VIP (visually impaired person). Adapting to Vision Loss is a bit like going through the stages of grief. Consequently, I have quietly experienced periods of denial, anger, bargaining, depression and acceptance. as well as sporadic moments of profound philosophical insights into , cribbage, shoveling snow and the human comedy.

A timeline of that path would include: Eight years ago I stopped playing basketball. Six years ago I stopped driving Five years ago ended my commercial graphic design business as my skillsets slowed,. Two years ago I stopped reading print, transitioning to software that converts text-to-speech. Last year, thanks to ZOOM, I hired an assistant to screen share and aid me with intricate computer tasks. Technology Rocks. I ❤️ Voice Over.

As an artist, the impact has been disturbing. but I am determined to not let that defeat me. I am resolved to persist and record this journey. –KBS June 5, 2021