Chances are if you're reading this you, or someone you love, has been diagnosed with an inherited eye disease. And you're feeling devastated.
My son has been diagnosed with an inherited eye disease. He is 16 years old. His vision has deteriorated for three consecutive years. Our current eye doctor says there is nothing we can do and does not advise us to seek the services of a specialist. Isn't there something we can do?
Dr. Edwin Stone and his collegues would, in all likelihood, strongly disagree that A) there is nothing that can be done and B) there is no need to see a specialist. He would say "I never tell people there is 'no treatment' because I believe that reassurance, genetic counseling, discussion of optimistic research results, etc. are all 'treatment'."
First of all, if you (or someone you love) has been diagnosed with a very significant medical condition, it is natural to want to know everything you can about it. It is much better to get this information in person from someone who has cared for lots of patients with the same disorder than it is to surf the web and read all sorts of frightening information -- much of which would not apply to your situation and much of which is not accurate in the first place.
In addition, there has been a lot of research on inherited eye diseases in the past decade. Not only do most patients find this very encouraging to hear about but it is also the case that many patients help to uncover "clues" that often lead to further discovery.
Finally, and perhaps most importantly, there are excellent rehabilitational devices available these days that can help patients do just about anything they need to do at home or at work. The matching of these devices to the patient is a mixture of art and science that is best done by a very experienced "vision rehabilitation specialist" such as Dr. Mark Wilkinson at our institution.
As you explore this Carver Lab FAQs resource we think you'll agree that with the research being done today, there is something we can all do.
And yes, there is hope.
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