low vision

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 .


Remembering Normal

U C me. I C U. Hmm. Sort of. Well, not really.

Vera toasting a beautiful day

As my central vision has degenerated over the past six years, I have been adapting to accommodate my limitations. For example, watching television, shaving, reading email and clipping my fingernails. These all require workarounds.

When having a conversation at a normal distance, I don’t see the other persons face. There is just a gray blur above their neck. To see their facial features, I look to the right and down, just above their shoulder.  That is my peripheral strong spot. Even though I don’t see their expression, by looking towards their face, I assume that they are unaware of my deception. For them, everything is “Normal.” This is just one technique I have developed to limit being “different”.

Or so I thought until last night when I had a conversation with my wife at the dinner table. She said she misses eye contact with me. I was stunned. It may not be as obvious to others, but with her, my work-around is a FAIL! 

Merde! Social interaction and non-verbal communication by eye contact is becoming just a memory. More critically, it is essential to intimacy. I am being deprived but didn’t realize it because this has happened so gradually. Writing about it here, I realize how much I miss it. 👁️