Hello... I've got Stargardts too and I can relate to everything that you mentioned. This week's been pretty bad for me, but like you said we've just got to be more strong..! Thankyou :)
Sukanya Shankar thank you for your comment and sorry to hear things aren’t great at the moment but just remember that bad times don’t last forever, they’ll pass and you’ll move on and kick ass again
I like your outlook. You have a similar mentality to myself. I was diagnosed with Stargahdts 8 years ago, and it got more apparent quickly. Adapting is the nest way to live with this and realise it could be so much worse, but mainly concentrating on what i can do and not what I can't do.
Hi how are you, I also have Stargardts And like you I was diagnosed when I was 7 years old, I am 28 now and everything you describe i can relate to also regarding your vision however I don’t see double when I focus on objects close up instead I just frustrate my eyes and give myself headaches . I use my camera to do the exact same things as you I think it’s brilliant for getting around public transport, airports etc.. some days can be more difficult than others especially when driving is out of the option and a long day can feel like a much longer day dealing with all the extra challenges but the fact that I can get out and about and do pretty much all I need and want with a few exceptions is perfect enough. I come from a family who have been in the motor trade all their lives and I am a huge car fan so you can imagine how devastated I was even at 7 to be told it was a big No driving is not going to happen I’m afraid. It certainly hasn’t stopped my interest at all. There’s so muchI have done and still can do with limited vision even driving on a race track, goKarting , horse riding , tennis, American football, rugby anything I wanted to do I did it just did it in a different way and that’s the key to it I think. Personal question are you Irish your accent sounds Irish sorry .
Robert Brady ha yeah dude I’m Irish. It’s all about moving forward, I’m back in college studying animation and game design. My eyes are causing me issues especially with live demos in class and means I have to work twice as hard to keep up but I’m doing it
Please be informed American Stargardt's patient treated by nano-grade eye drops can improve and reverse his vision greatly. Please browse www.godforeye.com This is not fairy-tale story. Other Stargardt's patients in India, Lithuania, etc. also coveted by God's mercy. All glory belongs to God !
I've been dx for nearly 9yrs. Reg blind. I work at a restaurant, and it can be so f*cking hard sometimes! Colleagues don't understand and think I use it as an excuse to be lazy or am selective about what I can see. Customers obviously can't know, it's an invisible disability. I've never had issues with accepting this part of me, I have a lot of pride around my independence. I started my job n the same day as two other girls, they subsequently received training for other tasks like making coffee, serving food, doing the till. I was never trained to do anything despite asking, and have been left in a position of washing pots every shift. My manager said she didn't train me to do anything, and thought she would "leave me to my own devices" because of my vi. She has basically given zero support or accommodation, I have a right to be trained to do what other people can, within reason, right? She thought the compassionate thing to do would be to leave me alone, my boyfriend says it's just an excuse for her lazy management. 7 people have started work there after me and have surpassed me, ability wise. They all received training. For nearly 6 months I agonized why I was being left out, thinking I wasn't being trained because I was rubbish or they didn't give a shit about me, and kinda gave up trying hard to impress at my job because I felt robbed off.
It can be rough, I have had friends getting work just because they had disabilities just so the employer could feel good about themselves or feel a quota. I feel like that in my current job where my boss doesn't seem to complain much about my mess ups but Ive seen him chastise others for less. On one hand its kind of nice but on the other Im not being treated as an equal even for the bad stuff. I guess all you can do is tell your boss you want more, although with people like that theyll see you as the a-hole and being ungrateful rather than realising what they're doing
Just came across you channel and was like aghh he's irish.. im also irish, have stargardts, was diagnosed when I was 8ish and I'm now 29.. iv only ever met one other Irish person with stargardts so just thought I'd say hi!!
Joanne Creamer well hi back and thanks for watch, honestly I haven’t met anyone myself apart from my older brother but then I’ve never actively searched ha
irishxero I'm sorta the same.. the one person I met was when I was younger through NCBI, every year they did a tour and she just happened to be in my area but that was back when I was in my early teens... just as iv got older I started doing research and what not .. trying to get confidence and inspiration to do my own video!! 🙈
Joanne Creamer if I can do this anyone can, just think of it as you talking to yourself and don’t be afraid to look a bit silly at first as everyone does. I hope you do it and get your voice out there
is it hard living in normal life? mine seems progressing im scared, im only 26. my symptoms are - Gray Shades(transparent) - Permanent Black Spot(white while eye closed, disappear during sleep i don’t why) - high sensitive to light - have lazy left eye since i was a kid on the other hand i have eye check up this feb.
irishxero hmm. How much does it actually cost I live in a small town I have no access. And I have to travel to Hanover or Bremen to get I guess. But I need to know what to expect. You know any hacks of stuff you can use ontti your glasses? For zoom
irishxero that's so bad. Will try to see if I can drive by putig a full HD camera on board and connect it to a big tablet and the camera will film the driving sings that will show into my tablet. I wanna see fit it works and if I can get permission. I hope j get how j mean it. Usually people don't
Such wise and honest words (without drama), thank you. Perfect for anxious parents too.
Thanks dude, it helps when you're diagnosed young because when your older the tragedy part is over and you're just living your life
Hello... I've got Stargardts too and I can relate to everything that you mentioned. This week's been pretty bad for me, but like you said we've just got to be more strong..!
Thankyou :)
Sukanya Shankar thank you for your comment and sorry to hear things aren’t great at the moment but just remember that bad times don’t last forever, they’ll pass and you’ll move on and kick ass again
I like your outlook. You have a similar mentality to myself. I was diagnosed with Stargahdts 8 years ago, and it got more apparent quickly. Adapting is the nest way to live with this and realise it could be so much worse, but mainly concentrating on what i can do and not what I can't do.
Sam Riley it’ll always be tough especially as time goes on but you’ve made it 8 years so far and I think you’re over the worst of it
Hi how are you,
I also have Stargardts
And like you I was diagnosed when I was 7 years old, I am 28 now and everything you describe i can relate to also regarding your vision however I don’t see double when I focus on objects close up instead I just frustrate my eyes and give myself headaches .
I use my camera to do the exact same things as you I think it’s brilliant for getting around public transport, airports etc..
some days can be more difficult than others especially when driving is out of the option and a long day can feel like a much longer day dealing with all the extra challenges but the fact that I can get out and about and do pretty much all I need and want with a few exceptions is perfect enough.
I come from a family who have been in the motor trade all their lives and I am a huge car fan so you can imagine how devastated I was even at 7 to be told it was a big No driving is not going to happen I’m afraid.
It certainly hasn’t stopped my interest at all.
There’s so muchI have done and still can do with limited vision even driving on a race track, goKarting , horse riding , tennis, American football, rugby anything I wanted to do I did it just did it in a different way and that’s the key to it I think.
Personal question are you Irish your accent sounds Irish sorry .
Robert Brady ha yeah dude I’m Irish. It’s all about moving forward, I’m back in college studying animation and game design. My eyes are causing me issues especially with live demos in class and means I have to work twice as hard to keep up but I’m doing it
Please be informed American Stargardt's patient treated by nano-grade eye drops
can improve and reverse his vision greatly. Please browse www.godforeye.com
This is not fairy-tale story. Other Stargardt's patients in India, Lithuania, etc.
also coveted by God's mercy.
All glory belongs to God !
I've been dx for nearly 9yrs. Reg blind. I work at a restaurant, and it can be so f*cking hard sometimes! Colleagues don't understand and think I use it as an excuse to be lazy or am selective about what I can see. Customers obviously can't know, it's an invisible disability. I've never had issues with accepting this part of me, I have a lot of pride around my independence. I started my job n the same day as two other girls, they subsequently received training for other tasks like making coffee, serving food, doing the till. I was never trained to do anything despite asking, and have been left in a position of washing pots every shift. My manager said she didn't train me to do anything, and thought she would "leave me to my own devices" because of my vi. She has basically given zero support or accommodation, I have a right to be trained to do what other people can, within reason, right? She thought the compassionate thing to do would be to leave me alone, my boyfriend says it's just an excuse for her lazy management. 7 people have started work there after me and have surpassed me, ability wise. They all received training. For nearly 6 months I agonized why I was being left out, thinking I wasn't being trained because I was rubbish or they didn't give a shit about me, and kinda gave up trying hard to impress at my job because I felt robbed off.
It can be rough, I have had friends getting work just because they had disabilities just so the employer could feel good about themselves or feel a quota. I feel like that in my current job where my boss doesn't seem to complain much about my mess ups but Ive seen him chastise others for less. On one hand its kind of nice but on the other Im not being treated as an equal even for the bad stuff. I guess all you can do is tell your boss you want more, although with people like that theyll see you as the a-hole and being ungrateful rather than realising what they're doing
Just came across you channel and was like aghh he's irish.. im also irish, have stargardts, was diagnosed when I was 8ish and I'm now 29.. iv only ever met one other Irish person with stargardts so just thought I'd say hi!!
Joanne Creamer well hi back and thanks for watch, honestly I haven’t met anyone myself apart from my older brother but then I’ve never actively searched ha
irishxero I'm sorta the same.. the one person I met was when I was younger through NCBI, every year they did a tour and she just happened to be in my area but that was back when I was in my early teens... just as iv got older I started doing research and what not .. trying to get confidence and inspiration to do my own video!! 🙈
Joanne Creamer if I can do this anyone can, just think of it as you talking to yourself and don’t be afraid to look a bit silly at first as everyone does. I hope you do it and get your voice out there
irishxero il do a few trial runs and see how it goes first and hopefully it will be up there in the near future!! 🙈
Joanne Creamer good luck with it and always be yourself
is it hard living in normal life?
mine seems progressing im scared, im only 26.
my symptoms are
- Gray Shades(transparent)
- Permanent Black Spot(white while eye closed, disappear during sleep i don’t why)
- high sensitive to light
- have lazy left eye since i was a kid
on the other hand i have eye check up this feb.
Wow long time my Irish friend hope all is well
sure is dude, hope its the same for you
Thanx glad to see all is well keep the vids coming have a great Memorial Day weekend
Thanks dude but Im irish and living in ireland so its just a normal weekend but you have a good one yourself
Did anyone try ocutec or any buoptic lenss
Effct Die auswirkung von wörtern there's a lot of tech out there but it's super expensive
irishxero hmm. How much does it actually cost I live in a small town I have no access. And I have to travel to Hanover or Bremen to get I guess. But I need to know what to expect. You know any hacks of stuff you can use ontti your glasses? For zoom
Effct Die auswirkung von wörtern the most popular headset is called “esight" they have a CZcams channel. Their headset costs $10000 though
irishxero that's so bad. Will try to see if I can drive by putig a full HD camera on board and connect it to a big tablet and the camera will film the driving sings that will show into my tablet. I wanna see fit it works and if I can get permission. I hope j get how j mean it. Usually people don't