One woman’s journey

I wanted to present an excellent book, which should be mandatory reading for all optometrists, not just those of us who practice low vision.  

Not Fade Away is a memoir/autobiography of a woman who started losing her hearing and vision due to Usher’s syndrome when she was a teenager. It tells the story of her life today, and how she has dealt with the gradual loss of these senses that we all take for granted. The author, Rebecca Alexander, is a trained psychotherapist. As such, she tells her inspiring story with a mix of self- and self-deprecating humor. Mostly, she lays it out all out there with brutal honesty that makes for compelling reading. 

There is a visual and an emotional aspect

As an optometrist who specializes in patients with Low Vision conditions, I have dealt with the visual effects of RP (Retinitis Pigmentosa) in over 100 patients. Many, I have gotten to know over the years, but this book really made me realize/remember the emotional aspect that these patients go through.

Due to the nature of the condition, there are fewer aids available to help patients with RP and its variants as compared to the typical AMD patient. Many have less than 5 degrees central field, and even when central vision is close to 20/20, there are typically significant glare and contrast sensitivity issues. As such, magnifiers, portable and desktop CCTVs are often less helpful due to magnifying items out of the patient’s field of view.   

Low vision care for the typical RP patients tends to be directed towards:

  • Basic trial frame refraction to ensure maximal acuity for central vision;
  • mobility training (cane, and scanning techniques, sometimes reverse telescopes); 
  • glare control (different filters); 
  • contrast enhancement (filters and newer CCTVs allow for reverse contrast mode with minimal magnification).     

Often, visits with these patients are as about much hand-holding and counseling as they are finding the right optical device for them. Discussions about existing therapies and those in the research pipeline are often optimistic, but the reality is that many patients will not have these treatment options in their lifetime. The amazing thing is that many of these patients, empowered by a positive attitude, lead active and productive lives. It is rewarding to be in a position to help them do so.