After a diagnosis of Stargardt’s Disease

What follows is an open letter I wrote to the Stargardt’s Disease Facebook page, which I would like to share with everyone.

Dear Stargardt Disease (SD) FaceBook members,

By Henry A Greene, OD, FAAO Co-founder and President of Ocutech, Inc.

Former Professor in the Department of Ophthalmology, University of North Carolina, Chapel Hill, and director of the Low Vision Service

I have been following the Stargardt’s Facebook page for many months now, and I have begun to feel that after your diagnosis has been made, many of you have been pretty much left on your own—perhaps after being told that there are no cures and nothing else can be done—prompting, for many of you, individual efforts to treat yourselves. The questions that many are asking suggest to me that you are not getting the low vision support that you need, and as a result I have decided that it’s time for me to ‘pipe in.’

I am an optometrist and low vision specialist who has cared for hundreds of individuals with SD over my 40+ year career.  After optometry school, I was trained at the low vision clinic of the Industrial Home for the Blind, which became the Helen Keller Center, in NY. I subsequently ran the low vision clinic at the Blind Association of Western New York, in Buffalo, and then ran the low vision program at the University of North Carolina at Chapel Hill for over 20 years.  I am also the co-founder of Ocutech, a maker of bioptic telescopes for the visually impaired, for which we have in the past received grant funding from the National Eye Institute.  This funding helped us to develop our original manual focus and subsequent autofocusing bioptic telescopes.  So, while I am not a researcher helping to find medical cures for SD (the holy grail), I am very experienced in helping SD patients cope with their vision challenges and in prescribing and recommending options to help them maximize their remaining sight.

I can imagine nothing scarier than being diagnosed with a disease that will threaten your vision (except perhaps for cancer). The lack of information, advice and support that you all clearly desire, need, and deserve is truly disheartening.  Early on, when you began to notice that your vision was changing, there could be very little if any noticeable change on your retina.  So, your eye doctor would understandably look for other causes and maybe even suggest that the issue might be emotional rather than physical. Ultimately, the appearance of the macula does begin to change, and the diagnosis will become more obvious. Usually (but not always) the diagnosis can be confirmed by additional genetic and/or diagnostic testing. 

It’s also understandable that once diagnosed, individuals first seek a cure—medication, injections, diet, supplements, whatever, to regain vision or retard progression.  The reality at this time is that there is no known treatment that helps.  There is no secret somewhere waiting for you to find.  Why would some person or some firm want to keep secret a treatment that might make them wealthy?  And online treatments of whatever kind proposing to help you regain or preserve your sight are more for the seller’s benefit than for yours.  There are ongoing research trials exploring potential treatments for Stargardt’s Disease.  These can be found at: https://clinicaltrials.gov/ct2/results?cond=Stargardt+Disease&term=&cntry=&state=&city=&dist

We cannot predict in SD how reduced your vision may become. However, you will never lose your peripheral (side) vision from SD, it is only the central macula area that is affected, so you will likely always be able to see well enough to walk.  And, I personally have never encountered an individual with SD that progressed to the degree of needing to use braille or a guide dog, though evidently there are some individuals who may have.

You should also know that vision as reduced as 20/200 (and maybe even 20/300) is usually very easy to help with low vision aids, and people with SD respond exceedingly well to both optical and digital magnification options.  There are software programs to conveniently enlarge and modify how computer screen content is displayed, tons of phone apps for all sorts of ways to support the visually impaired, optical and electronic magnifiers to make printed materials easier to read, and telescopic glasses (bioptics) to help you see the world around you better.

Before submitting this note to the SD FB group, I passed it by my colleague, Janet Sunness, MD, an international expert in macular degeneration and Stargardt’s Disease at the Hoover Low Vision Rehabilitation Service at the Greater Baltimore Medical Center (https://www.gbmc.org/lowvision), for her opinion. She agreed with my message and suggested that this letter be shared.

I hope this note is helpful, and I wish you all the best of luck.