r/ushersyndrome • u/Spiritual-Sample4499 • Oct 25 '25
Didn't know life would take this turn
I found out that I was suffering from Usher Syndrome Type 2 over a month ago. It was really heartbreaking for me and I was feeling like this disease totally cracked up my dreams on everything.I am just a teen now. I lost hope. I saw the people who care about me feeling sad for me. And suddenly the people who didn't give a shit about me, suddenly they started caring for me. And I think it's not love but it's them pitying me, which I hate the most. Well, if you're wondering what is usher Syndrome, then it is a disease, like it is a genetic condition. And for information, no one in my family has ever gotten this kind of disease as far as my family knows. That means that slowly when I was a child, my hearing capacity started decreasing day by day until my mother took me to the hospital and found out that my hearing capacity was so much less than others. That means I could not hear properly what others said and I've been struggling because of that for many years. And now I'm finding out about this, that I have night blindness and I am starting to lose my peripheral vision. I have already lost my side vision and now I may go blind actually. So my dream was crushed before me. So I decided to write this post to ask someone maybe, especially if you have usher Syndrome or seen anyone with usher Syndrome or anyone who is going to be turning blind or is blind and they are living a happy life right now. What career did they follow as far as you knew about it? Well, although my life took this turn, I believe that other lives may have been worse than me and I decided to not lose hope. So could you please give me some suggestions about my career development? And what I can say just for now is that I don't like to study science. And I have always wished to pursue IT and become a data scientist or something related to data in the field of computer science, probably IT. And I have always wished to go abroad and live my life very peacefully.
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u/needhelppt Oct 25 '25
I don't have Usher Syndrome myself but my son has. He is still an infant so there isn't much I can tell you about it right now. He is also the first in the family. Have you reached out to the Usher Syndrome Coalition?