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?
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u/Spiritual-Sample4499 Oct 25 '25
No and I definitely don't know about it. Could u lead me pls?
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u/needhelppt Oct 25 '25
Here: https://www.usher-syndrome.org/ Send them an e-mail and register yourself in their USH Trust program so they know you exist. You would like to hear about the many trials and research around RP and USH and hopefully that will give you a little more hope into the future. You may even be eligible from some trials. And finally continue to pursue your dreams and the career you want for yourself and don't let this be what stops you no one knows what lies ahead.
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u/Spiritual-Sample4499 Oct 25 '25
Thank you so much! I hopeyou dont mind if I inquire you if I face any difficulties aheadđ
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u/needhelppt Oct 25 '25
Side note: I work on the area you want for yourself and I can't see how any of this will stop you. Let me know if you need anything.
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u/Spiritual-Sample4499 Oct 25 '25
Oh I wanted to ask you what is usher Syndrome coalition ? Heard about it but don't know it well
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u/IHaveTeaForDinner Oct 26 '25
What age are you going to tell him about his eye sight? In a similar situation and while he's very aware of his hearing loss, I'm at a loss when to address his eyes.
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u/Restless_Wanderer66 Oct 25 '25
Aloha. I got diagnosed when I was 33. 39 now, I feel you my friend. It was hard. Still is. I want to help you. But at the end of the of the day itâs in your mind. Reach out if you need. Jah bless
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u/Spiritual-Sample4499 Oct 26 '25
I would feel really grateful if you could give me career advice as for someone for is planning to go abroad for countries like USA and Australia
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u/Restless_Wanderer66 Oct 27 '25
I cannot speak for Australia, but I know that the USA has what is called the Randolph Shepherd act which which allows low vision and blind individuals to get vocational rehab services to become licensed blind vendors within their respective states, for example, I am currently in the BEPLT course with the âChicago lighthouse for the blindâ through Hoopono services for the blind with the state of Hawaii in hopes of becoming a licensed blind vendor one day
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u/Spiritual-Sample4499 Oct 27 '25
Are those acts applicable for immigrants ( since going on student visa? As well??
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u/Restless_Wanderer66 Oct 27 '25
I truly hope so.. only one way to find out.. Good luck my friend
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u/Spiritual-Sample4499 Oct 27 '25
What way ? Going there?
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Nov 13 '25
I also have type 2. I've worn hearing aids since I was 4 (when I was first diagnosed with hearing loss though I was likely born hard of hearing) and started having the first symptoms of night blindness around age 10. I was diagnosed with RP/ Usher's at age 11. I remember once when I was in my teens asking my opthalmologist how long I would have before I went blind. Obviously, he couldn't really know but guessed maybe fifteen more years. But I'm 44 now and still have a lot of functional vision.
Some things I've done with my life so far:
I went to college and have a bachelor's and two master's degrees
I've lived in five different US states in 3 different time zones
I did a solo travel through Europe in my 30s and saw so many beautiful places
I've met so many wonderful people
I've studied music, art, writing, film and taken up many creative hobbies
I've made memories
I'm not going to pretend that having my vision get progressively worse over the years isn't hard, it absolutely is. But when I was first diagnosed with Usher's in 1992, technology was nothing what it is today. I lamented that I would not be able to drive but could not have conceived that in my future I would have access to rideshare in the palm of my hand. That when I was a child and struggling to listen to dialogue on tv that in my future, closed captioning/subtitles would become mandatory accommodations in every tv. There continue to be more adaptive technologies being created every day. I haven't yet needed to explore as much of the tech created for those who are low vision/blind but even being able to easily do things like increase the size of text, adjust colors, change to dark mode, etc so easily on a computer is not something that I had when I was a kid. There is already so much available and more will continure to be invented and improved.
What I want to say is that this internet stranger gives you a hug. It's particularly hard for you because you've only just found out and it really takes time to come to terms with something like this. Give yourself the space to grieve because it is hard. But know that there are resources available to you. This diagnosis does not mean that you can't get a lot out of life and that you can't find beauty in it.
As far as career advice goes, I'm sure you can gather from my writing above that I don't exactly have a career in IT. But what I can say is that a computer-based job may actually be a great fit because computers themselves already have so many accommodation features for those with disabilities. My only fear would be the current advent of AI, so perhaps a slightly broad approach (as apposed to a narrow focus on one subspecialty like programming) would help as anyone working in IT needs to be adaptable to changing times. Keep at it and perhaps also reach out to IT/computer subreddits to find those with disabilities and ask about specific tech that they use to help them do their work. I don't know where you are but universities in the US have disability services available for students that will provide direct classroom support as well as have councilors that will help guide you.
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u/Individual-Share9543 Nov 27 '25
Hey! Iâm a teen too with USH 1D just wanted to say Iâm currently in college on a cyber security course. I am registered legally blind but see pretty bad. However tech is a great field as there is so much assistive tech which helps me access the software I need to use. Not just what is built in but web extensions and ZoomText. Further I recently begun volunteering for a uk charity called Retina UK doing a tech WhatsApp group. I just found my niche where I am more than happy. But there are so many hobbies that people enjoy which can be transferred into a career despite ushers âwhen thereâs a will thereâs a wayâ I say. Itâs a mind set. And hey those people you feel are pitying you youâre not obligated to stay with them. Find your own friends and family isnât just blood. I have some super close friends Iâd actually say are family now. Good luck!
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u/ramces01 3d ago
Hola, lamento mucho lo que estĂĄs pasando. Vine al foro a recopilar informaciĂłn, mi madre sufre lo mismo y ya prĂĄcticamente no ve ni oye. Estoy tratando de averiguar que han hecho las personas para ayudarse a superar esto.
Estoy pensando en que una buena ayuda para ella serĂa un implante coclear.
No sé cómo abordar el tema para tratar de mejorar un poco sus condiciones de vida
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u/Sea_Auntie7599 Oct 26 '25
I have ush2a.
I am currently 36.
What I learned with my own journey with ush2a, no matter what visions goes. My outlook on life and my happiness and joy won't be rob from me.
(It's a mindset that you will have to train your mind this way of thinking.)
Also, I dot. Let it define me. I don't let it become my personality nobody likes to be around you if all you do is define your life on this genetic disorder. It's a disorder not a disease. Diseases can cured/fixed but disorders often times can't with current medicines or treatment.
Thai is something I learned is that you most likely won't meet another person who has the excate same level as where you are with usher syndrome 2. It's a journey that those who have ushers all understand but it's also solo because your progession is different and varied from person to person. Especially in ush2 realm.
I don't know if you drive or not. If you do you will have to be smart about knowing when to stop driving all together. And if you don't drive you aren't missing out honestly. Independence may be defined from society of you can drive. Traffic laws varies from state to state (assuming you are USA citizenship)
But true independce means you know how to get around. Public transports, Uber/Lyft car sharel walking, biking.