ICYMI: It wasn't until Scott was in his 20s that a doctor asked if he had heard of the rare genetic syndrome. – via healthing_ca jsrdf JoubertSyndrome RareDiseases cerebralpalsy
Every two years they hold an international conference and it wasn’t really until that conference and meeting individuals and families physically that I started to get more of a sense of like,. I got a little more excited, a little more, I’ll say, passionate about it, seeing other people with similar needs to me.Not really, because, like I said before, it had always been cerebral palsy or something else.
I was bullied and ostracized above the age of 11 and that took me out of a lot of social settings for several years, but I kind of just found my own interest. I like writing; I went to college for script writing and I have I’ve spoken at a few conferences, which went over very well and led to being asked to be on the board.
I do have respiratory issues, so I’m always conscious of not really exerting myself too much. I have to be careful with balance and coordination; especially in the winter it’s hard to get out. So, I have a treadmill here at home I use for exercise, things like that. With my kidney and liver, there’s always a chance of something happening, so over time I’ve become one more conscious of what I eat, exercising, just asking for help if there’s anything I need.
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