Open letter to Stargardt's Facebook Group
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,
I have been following the Stargardt’s FaceBook page for several months now, and I have begun to feel that after your diagnosis has been made, 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, 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 may even suggest that the issue could 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 someone 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:
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, 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.
Trying to solve your challenges on your own can be costly, frustrating and often not productive. Please find and visit a low vision clinic—you are unlikely to find equipment on your own that will be effective. It is now the standard of care in ophthalmology that visually impaired individuals be referred for low vision evaluations, and you should request it. It’s understandable that you’d prefer to find a cure. You may not be ready to use equipment that might make you appear a bit unusual, especially in public, but you owe it to yourself to learn what your options are. You may not be ready to adopt any of them, and that’s your right; however you should be making informed decisions. The most frequently heard response by SD patients after their low vision evaluation is “Why hasn’t anyone told me about this stuff before? It could have made my life so much easier.”
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, for her opinion. She was enthusiastic that I submit it to you. She also invited me to attach a paper she wrote in 2011 about SD, which she suggests remains current, and I am honored to do so.
I hope this note is helpful, and I wish you all the best of luck.
Henry Greene, OD, FAAO