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Hello, I'm a 17 years old student from Italy. The disability you can see in the title is really rare and I'm the only case in my country. A lot of problems came with this situation: I don't know if it's going to get worse and I don't actually know anything about it other then what I feel and see in my body. So I'm scared, I was diagnosed a couple of months ago after 16 years of researches. What if my years to live are shorter than the normality? I can't really talk about my preoccupations with my parents or my sister because they never want to have "deep" conversations, they're not capable to handle it. I do exams every month for the sake of researches and go to school normally. My disability is visible but it's not something I'm ashamed, it has never been. Sorry for my English it's not my first language, I just needed to let this out.
ps: I know there are like 50 people in the world that have the same thing as me, if you are one of them and know more about the disease please contact me!
@verysadface Hello! Thank you for bravely sharing your feelings and thoughts with us! I understand it must have been really difficult to feel scared, to know very little of this condition and to feel disconnected with family. Please remain strong and brave. You can do this! 
With perseverance, I believe you can find the support that you're looking for. Nevertheless, you can always seek here. You may send me a message too.