[nfb-db] April: Types of Usher

[Catherine Miller]

April, congratulations on your initiative in reading everything you can about Usher Syndrome.  I did the same thing when I could read print, and information in print is very plentiful.  I was convinced based on my reading that I had Usher 3; but recently I went to see an ophthalmologist at Baylor College of Medicine in Houston who assured me that I have Usher 2.  I am currently getting to the bottom of it by paying for genetic testing, which will not only answwer that question once and for all, but results will indicate which experimental trials I qualify for.

To answer your question, though:  Based on everything I've learned, RP is predictably unpredictable.  I am 58 years old and have lost the ability to read print within the last year or two.  Having learned to read braille four times during my life, I have finally begun using it consistently and relying upon it in the course of my daily living.  Those previous attempts were not wasted, though.  The made it infinitely faster and easier the final time.  Every moment I spent with the dots under my fingers was useful in preparing me for the present in which I thoroughly enjoy reading my favorite publication, The National Geographic, in braille every month from cover to cover.

April, if you haven't already done so, I suggest you find a doctor who will support you in the use of Vitamin A Palmitate.  I have taken 15000 Units of it daily for the last ten years.  When I started taking it, I had lost all but light perception in my left eye.  The eye had turned so it faced to the outside, because there was no vision to keep the muscle working to hold the eye centered in front.  After a few weeks of Vitamin A therapy, I regained some vision in my left eye.

But the left eye was already turned outward, so the image out to the side was superimposed on top of the image from my right eye, causing double vision.  I sought out a surgeon who performs a particular procedure for straightening the eye by shortening the muscle.  It is often done on children who have this condition, call Strabismus.  After the surgery, I regained depth perception, a very valuable thing to have!!  My left eye is still straight, and I enjoyed the depth perception for many years.  But now the disease has overtaken my ability to see anything but light perception.

In short, the Vitamin A therapy has provided me with several additional years of useful vision.  Thee pills are not expensive, and the only precaution I needed was to have a simple blood test every six months to make sure the treatment was not damagine my uh, what is it?  Liver?  Kidneys?  In any case, blood tested perfectly clean every time.  I am still using the Vitamin A Palmitate and testing, because I find light perception to be a very useful thing to have.

April and all who post here, thank you so much for spending time on this list.  We do unbelievably important good for each other by sharing our deafblind experiences.  No one else can really understand, and we are truly a family here.

Cathy Miller

Sent from my iPad