Deb:
I think you will find that quite a number of list participants 
have retinopathy of prematurity (R.O.P., formerly known as 
retrolentalfibroplasia). I am one of them. I believe President 
Maurer is also a ROP kid. Many of us were (as were you) during the 
'40's and early '50's when incubator technology became 
sufficiently advanced to keep babies alive who had heretofore died 
because they were too premature to live.
I was born in 1948. I was diagnosed with the condition a few 
months after birth. Both eyes suffered retinal scarring resulting 
in detachd retinas. I was told I could detect colors but do not 
remember it. I could see light and shadows but could not see 
emough to read. Eventually, I developed cataracts in both eyes 
(one ophthalmologist of my acquaintance told me ROP-affected 
people seem to either get cataracts or glaucoma or both) and had 
the lenses of both eyes removed. Even so, as time went on, my 
sight decreased and I eventually developed glaucoma in both eyes 
due to iritis caused by decomposition of the retinas (the body 
thinks they are foreign matter and attacks them resulting in the 
inflamation and iritation of the cornea). I almost lost my right 
eye in 1985 and my left eye got bad enough last fall (part of the 
cornea came off at one point) that I elected to have the left eye 
eviscerated. This is different from enucleation in that in the 
latter, eyeball and all are taken while in an evisceration, 
eyeball and cornea remain but the retina and other tissues are 
removed. I have a silicon implant in that eye now to maintain the 
faciail bone structure. Feels much better!
I haven't done any research on this for several years now but 
remember when I last looked into this that people were 
investigating the possibility that light might have caused some of 
the damage. Nothing conclusive on that score had come up then and 
I bet nothing will now. Excess oxygen *may* be a factor in some 
ROP cases though there are full-term ROP babies who have had *no* 
excess oxygen in an incubator. Indeed, if I remember correctly, 
some 37% of ROP cases regress to the point where the eyes are 
normal and the only way anyone knows that the person had ROP was 
for an ophthalmologist to take a look. From what I read, the 
"excess oxygen" case is far more complicated than a simple surplus 
of oxygen -- the immature retinal blood vessels shrink to avoid 
the excess oxygen; the body then tries to make more blood vessels 
for the retina resulting in the overproliferation of vessels, 
retinal bleeding and consequent scarring.
The single real predictive factor for ROP is prematurity.  The 
research I read said that if a baby weighted at a kilogram or 
under it should be checked for ROP.
Treatment of ROP is iffy. Cryotherapy appears to be having some 
success. But no one knows thelong-term efficacy of treatment or, 
really, the long-term pathology of ROP. You and I are the first 
generation to grow up having had the disease. Anecdotally, it is 
my experience that more and more of us first-generation ROP kids 
are losing our vision (and, indeed, our eyes) as we grow to Middle 
Age and beyond.
Nevertheless, if you stick with the NFB, you will come to realize 
that you can lead a normal life as a blind person. Hang in there! 
We're all with you!
Mike Freeman; Internet: mikef@pacifier.com; Amateur Radio Callsign: K7UIJ
President, National Federation of the Blind of Washington
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