Mike,

      I was just web-surfing along and came across your web site, and in the last half hour learned more about RB than ever before despite having known about it since I was a kid. I was born with unilateral RB and my left eye was enucleated at Columbia Presbyterian in 1976 by Dr. Ellsworth (whom I see also treated some of the other folks that have written to you). My parents noticed that light bounced off my left eye sort of funny, had me checked out by the army doc, who in relatively short succession had me in NYC where enucleation was deemed the prudent course. It was just one eye but likely too far along for radiation or chemo to work. And, fortunately, that pretty much ended the story of tumors with me.

      After reading the many accounts on your page, I realize that I was truly lucky -- aside from the trouble of scheduling a retinal exam every year and the perpetual annoyance of discharge randomly appearing on my prosthesis, I have lived a lucky and happy life. My father was in the army so I grew up all over and have an inch-thick medical file of every new opthalmologist wanting to re-write up my whole story and my five prostheses to date have been created by a cast of ocularists across the globe. My RB is evidently the non-heridary kind but I did inherit my parents' extreme nearsightedness (-11 diopters and counting) and have sported glasses since I was 2. My 2-years-younger-than-me brother had no signs whatever of RB (though he shared the pleasure of frequent opthalmologist trips for EUAs when we were young, much to his disliking -- ditto on your stories of Tony's aversion to having his studio picture taken, though it was a short-lived phenomenon). I have never been much of an athlete but blame that more on the lack of coordination in my gangly frame than lack of 3-D vision -- the brain is an amazing thing and monocular cues been all I've needed to keep from banging into things most of my life. When you've never seen "3-D," it's hard to miss such extravagances.

      I am currently 24 years old and in Boston pursuing a dual MBA-engineering program at MIT. Though I rarely think about my eye (except sometimes when odd humidity shifts occur) and even more rarely remove it (some ocularists disapprove of this, some don't seem to care), I am currently in the process of "upgrading" since I now live almost immediately adjacent to the Mass Eye and Ear Infirmary. If anyone has had the IOI implant surgery (see www.ioi.com) or knows of any prosthetics with light-variable pupils (someone _has_ to have made that possible by now .. I hope), I'd love to hear. I have (amazingly) never actually met someone else with a prosthetic eye (much less RB) and definitely would appreciate shared war stories.

      Since I missed the stressful part of RB being barely conscious at the time (the story goes that the day before my operation, my mom asked me "you're going to have surgery tomorrow, what do you think?" and I replied "foot") I unfortunately have little to share about that. However, in terms of living a post-RB life with no adjustments, I'm happy to be proof. Thanks so much for setting up your site. I am sure that Tony will have a great life (my middle name is Anthony so the two of us have that bond going) and am confident that research will keep doing great things. I still have the medical records from 20-odd years ago and then enucleation seems to have been the only real choice -- thank goodness people are trying to save eyes nowadays. Again, thanks and best of luck to your family.

Tom Hoag

feel free to post/edit this if you think people might find it interesting.

_______________________________________________
Thomas Anthony Hoag
Leaders for Manufacturing Fellow, Class of 2000
Massachusetts Institute of Technology
thoag@mit.edu * 617-723-5016 * tahoag@ibm.net
6 Whittier Place #8M * Boston, Mass. 02114-1406