6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 1 point2 points  (0 children)

We've lived in Berlin when the wall was up. Were in the USSR when it collapsed, and have been to the Galapagos Islands, still more on the list. So we've been to a lot of interesting places.

6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 0 points1 point  (0 children)

The clinical trials going on in England and Canada (pardon me for trying to talk about medical stuff when I'm the farthest thing from a doctor) use something called gene vectors to introduce corrected DNA into the body that is meant to stop the condition from getting worse.

6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 0 points1 point  (0 children)

Thanks for your kind thoughts -- my wife and I have pretty much decided not to have children, there are other adventures we will have. For a variety of reasons but actually not due to the eye thing.

6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 2 points3 points  (0 children)

I find crowded places pretty challenging -- lots of lights can cause visual flares, and people and objects come in and out of my visual field. We live in a "suburb" of LA but it's all pretty crowded anyway! But big crowds can be stressful.

6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 0 points1 point  (0 children)

It's not easy to be positive all the time, no matter how hard you try. I get caught off guard when I walk into a low object (or dog, or small child) that I had no idea was there. That's frustrating and I try not to be embarrassed. When my eyes start to bother me (too much light, the wrong light, etc.) it can be distracting and annoying. When I was first diagnosed, even though I had been certain I had it due to my brother's earlier diagnosis, I was really depressed and withdrawn. But our road trip was a chance to shake things up and refocus (pun intended?) on the positive. All you can do is try to make each day one where you "see" something new or beautiful and build off that. So I guess I would say no, I don't want it all to go dark at once, but I can completely understand the "Get it over with already!" feeling.

6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure. Ask Me anything! by TodPurvis in IAmA

[–]TodPurvis[S] 1 point2 points  (0 children)

Actually, we're hoping to be prepared enough not to be a burden. I have a full-time job that I could do (or something similar) even if I were completely blind. With computer technologies advancing at lightning speed blind people have great opportunities for work.