Last week I went to the National Institutes of Health (which is also called the NIH) near Washington, DC. It is the United States research hospital. At the NIH, you get looked at by a lot of doctors! They are trying to understand rare diseases like XP/TTD. You also do a lot of crazy tests.
The eye test I did was crazy and pretty fun. They put drops on my eyes and I had to sit in a dark room for 30 minutes. Then they used these things sort of like contacts with electrodes coming out of them. They put them on my eyes, and then I had to look at bright, flashing lights. The contacts recorded how my eyes responded.
I also did ear and hearing tests. I listened to sounds, so that’s not too hard. I also did some tests kind of like an IQ test. And, I had my bones scanned. Oh! And I took medical photos. Those are weird! This time I brought a bathing suit so I didn’t have to take pictures in my underwear!
Hopefully doctors will learn more about XP/TTD through research.