Blind and Visually Impaired Community
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A Request For Advice. (self.Blind)
submitted by trippyellipses
Hello Redditors,
My name is Christian Alvarado and I attend California State University, Fullerton. I am a fourth year biological sciences major and counting. I carry a decent student loan debt and health issues that inspire myself to fight for a better life. I have a deep passion for the science field such as medicine. Specifically, Pediatric Neurology, Stem Cell and Epidimeology of Infecitious Diseases. Due to recent diagnosis encountering a genetic disorder called "Usher's Syndrome Type IIA," times have gone awry.
To begin before telling the full story, I was diagnosed at the age of four with "moderate to severe" hearing loss. I have worn a pair of hearing aids since then and never have I ever let my disability define my abilities to conquer the impossible. The cause for diagnosis was unknown and therefore, for 18 years it was a mystery as to what caused my hard of hearing.
Later, back in February of 2016, I took an exam called an "electroretinography (ERG)." This test tested for any defects within my retina. Mainly, targeting the responsiveness of the light sensitive cells of my eyes being the "rods and cones." The same day, I was diagnosed with "Retinitis Pigmentosa." This is an incurable eye disease that leads to permanent blindness. By the age of 20, progression of eye sight loss begins and blurs out into being completely blind due to dying of light sensitive cells. Night blindness is an issue. This affects nearly 100,000 people within the US, alone. I am 22 years old and now, seeing a loss in eyesight as blindspots grow bigger over time. Every RP patient has different experiences and outcomes.
Within March, I then received a call in regards to my genetic testing performed that very day in February. I found out that I have a genetic disorder called "Usher's Syndrome Type IIA." It was unexpected news as this confirmed my 18 year old diagnosis for hearing loss. Usher's Syndrome is a genetic disorder with two conditions: hearing loss and retinitis pigmentosa. With the two intertwined, it leads to a catastrophic outcome. You can become deaf blind according to the type you have. My type, has relatively stable hearing while my eyesight will go. Through all of this, I had walked a beaten path to then carry myself upwards.
See, Redditors, this is not story for all to perceive as a sad case. I truly believe I have potential in the likes of the world's second blind physician, Tim Cordes. Aspiring to obtain more and achieve my dreams, it has been increasingly difficult to manage a level head. This is where I reach out to you.
I have experienced a lot in life and some wonder how I keep going. I say, we have two options: we fight to breathe in this ocean or, we can drown. I believe in reaching the paradise we all aim to shoot for. My biggest concerns are learning the necessary knowledge to achieve my goals whether it be a doctor or researcher. I want to learn every scientific equipment possible so that I'm skilled in what I do. So that in time, I can manage a way to work things without the use of my eyesight and the use of a colleague at my expense. Here, I reach out to you.
To reach out is to ask for advice. For any of those who may be blind, may you teach me your wisdom. I want to be resilient just like those within the blind community. Scientists, please tell me what I can do to acheive my dreams. What I can do to still either work in the medical field or become a researcher. Or, my main focus, how to work in the field epidimeology of infectious diseases. I am just like everyone else with one common goal: to strive for the higher road becoming successful having reached my dreams. With time being limited and against me, are there any referrals? Guidance? Or directions to steer me onwards towards my success? Possibly post links and/or more? I want to have everything and know of every single thing available.
I have a deep passion to help people for a living. Whether it be on an individual basis to a population on a global scale, I want to contribute in some way to make a mark in this world and in the hearts of the people I encounter. I want to prove to younger generations that if I'm capable, that they are not limited. That not a single disability can stop them from achieving their dreams if they really set their mind to it. I want to die knowing that I have made an example of myself for those to be inspired and surpass the level that I am at. Whether it be an abled bodied individual to those who are disabled, I have a deep inclination and passion to be a person of change. I want to prove my doubters wrong and show my worth with every piece of my heart. Every one deserves a shot at their dreams. Some may work effortlessly, while some like myself, have to work harder than most. I want everyone to succeed with me, but those of the younger generation, I want to be a simple reminder that they are enabled. That life is not so bleak because there is a light at the end of the tunnel. I want many to be aware of and educated on a rare disease like mine. Please let me know and thank you so much for reading my story.
Best,
Christian Alvarado
Here's a link to help you understand what Usher's is and how RP works:
http://www.ushersyndromeidoc.org/rp/
My name is Christian Alvarado and I attend California State University, Fullerton. I am a fourth year biological sciences major and counting. I carry a decent student loan debt and health issues that inspire myself to fight for a better life. I have a deep passion for the science field such as medicine. Specifically, Pediatric Neurology, Stem Cell and Epidimeology of Infecitious Diseases. Due to recent diagnosis encountering a genetic disorder called "Usher's Syndrome Type IIA," times have gone awry.
To begin before telling the full story, I was diagnosed at the age of four with "moderate to severe" hearing loss. I have worn a pair of hearing aids since then and never have I ever let my disability define my abilities to conquer the impossible. The cause for diagnosis was unknown and therefore, for 18 years it was a mystery as to what caused my hard of hearing.
Later, back in February of 2016, I took an exam called an "electroretinography (ERG)." This test tested for any defects within my retina. Mainly, targeting the responsiveness of the light sensitive cells of my eyes being the "rods and cones." The same day, I was diagnosed with "Retinitis Pigmentosa." This is an incurable eye disease that leads to permanent blindness. By the age of 20, progression of eye sight loss begins and blurs out into being completely blind due to dying of light sensitive cells. Night blindness is an issue. This affects nearly 100,000 people within the US, alone. I am 22 years old and now, seeing a loss in eyesight as blindspots grow bigger over time. Every RP patient has different experiences and outcomes.
Within March, I then received a call in regards to my genetic testing performed that very day in February. I found out that I have a genetic disorder called "Usher's Syndrome Type IIA." It was unexpected news as this confirmed my 18 year old diagnosis for hearing loss. Usher's Syndrome is a genetic disorder with two conditions: hearing loss and retinitis pigmentosa. With the two intertwined, it leads to a catastrophic outcome. You can become deaf blind according to the type you have. My type, has relatively stable hearing while my eyesight will go. Through all of this, I had walked a beaten path to then carry myself upwards.
See, Redditors, this is not story for all to perceive as a sad case. I truly believe I have potential in the likes of the world's second blind physician, Tim Cordes. Aspiring to obtain more and achieve my dreams, it has been increasingly difficult to manage a level head. This is where I reach out to you.
I have experienced a lot in life and some wonder how I keep going. I say, we have two options: we fight to breathe in this ocean or, we can drown. I believe in reaching the paradise we all aim to shoot for. My biggest concerns are learning the necessary knowledge to achieve my goals whether it be a doctor or researcher. I want to learn every scientific equipment possible so that I'm skilled in what I do. So that in time, I can manage a way to work things without the use of my eyesight and the use of a colleague at my expense. Here, I reach out to you.
To reach out is to ask for advice. For any of those who may be blind, may you teach me your wisdom. I want to be resilient just like those within the blind community. Scientists, please tell me what I can do to acheive my dreams. What I can do to still either work in the medical field or become a researcher. Or, my main focus, how to work in the field epidimeology of infectious diseases. I am just like everyone else with one common goal: to strive for the higher road becoming successful having reached my dreams. With time being limited and against me, are there any referrals? Guidance? Or directions to steer me onwards towards my success? Possibly post links and/or more? I want to have everything and know of every single thing available.
I have a deep passion to help people for a living. Whether it be on an individual basis to a population on a global scale, I want to contribute in some way to make a mark in this world and in the hearts of the people I encounter. I want to prove to younger generations that if I'm capable, that they are not limited. That not a single disability can stop them from achieving their dreams if they really set their mind to it. I want to die knowing that I have made an example of myself for those to be inspired and surpass the level that I am at. Whether it be an abled bodied individual to those who are disabled, I have a deep inclination and passion to be a person of change. I want to prove my doubters wrong and show my worth with every piece of my heart. Every one deserves a shot at their dreams. Some may work effortlessly, while some like myself, have to work harder than most. I want everyone to succeed with me, but those of the younger generation, I want to be a simple reminder that they are enabled. That life is not so bleak because there is a light at the end of the tunnel. I want many to be aware of and educated on a rare disease like mine. Please let me know and thank you so much for reading my story.
Best,
Christian Alvarado
Here's a link to help you understand what Usher's is and how RP works:
http://www.ushersyndromeidoc.org/rp/
claudettemonet 2 points 6y ago
Wow, Christain. That blows. I too was recently diagnosed with RP (May)... did the ERG and all. My genetics came back and it looks like like it is just a recessive type for me. Still waiting to discuss it with the geneticist.. but anyway... I digress.
What is up with using your real name? Maybe it's because I am a girl and super paranoid about stalkers and murder and stuff, but geeze! That was a lot of details. Anyway, I go by Claudette Monet.. after Claude, who was a painter who almost went blind. I am a painter and I am hoping that I too will only almost go blind... I am an American... I now live in the country of America.. tho I was previously an expat in China.. I speak Mandarin. So that's the abbreviated intro to me.
As to finding a way to not freak out about the future.. idk I think those who are blind from birth have it easier in a lot of ways. There isn't the same sense of loss and mourning, nothing new they have to adapt to. I am not just saying this. Fastfinge is blind from birth. We've had this convo before. :)
So, as to what you are looking for in your post... Killerlag pointed out some very good things in terms of finding resources and mentors and finding ways to adapt. She is pretty awesome sauce. And if you every have a specific how to do a thing question, someone will always come up with an answer if you post here. It can also be a VI question, not strictly for blind issues.
I also picked up on a desire for some emotional support. That's about all I have to offer. I am not blind yet. I vaguely know about resources.. but don't really need to start adapting yet...I mean I tried to but the peeps there turned me away with a shrug...not much to do yet.
Anyway, the people I have found (I mean apart from everyone on this awesome sub) have been John Hull and Ryan Knighton. John Hull is very somber and thoughtful. So if that's the mood you are in, look up some stuff on him/by him. (That short film that won a bunch of stuff this year, Notes on Blindness, the audio was John Hulls audio diary) If you need something more lighthearted, Ryan is your man. There was also a talk between John Hull and this other blind guy, Zeigler maybe? It was a very good talk. Both men lost their sight and had very different approaches in terms of how they moved forward with their lives. I think it was on NPR.
Hope that helps. Don't be a stranger. And as Red Green says, I'm pullin' for ya.
What is up with using your real name? Maybe it's because I am a girl and super paranoid about stalkers and murder and stuff, but geeze! That was a lot of details. Anyway, I go by Claudette Monet.. after Claude, who was a painter who almost went blind. I am a painter and I am hoping that I too will only almost go blind... I am an American... I now live in the country of America.. tho I was previously an expat in China.. I speak Mandarin. So that's the abbreviated intro to me.
As to finding a way to not freak out about the future.. idk I think those who are blind from birth have it easier in a lot of ways. There isn't the same sense of loss and mourning, nothing new they have to adapt to. I am not just saying this. Fastfinge is blind from birth. We've had this convo before. :)
So, as to what you are looking for in your post... Killerlag pointed out some very good things in terms of finding resources and mentors and finding ways to adapt. She is pretty awesome sauce. And if you every have a specific how to do a thing question, someone will always come up with an answer if you post here. It can also be a VI question, not strictly for blind issues.
I also picked up on a desire for some emotional support. That's about all I have to offer. I am not blind yet. I vaguely know about resources.. but don't really need to start adapting yet...I mean I tried to but the peeps there turned me away with a shrug...not much to do yet.
Anyway, the people I have found (I mean apart from everyone on this awesome sub) have been John Hull and Ryan Knighton. John Hull is very somber and thoughtful. So if that's the mood you are in, look up some stuff on him/by him. (That short film that won a bunch of stuff this year, Notes on Blindness, the audio was John Hulls audio diary) If you need something more lighthearted, Ryan is your man. There was also a talk between John Hull and this other blind guy, Zeigler maybe? It was a very good talk. Both men lost their sight and had very different approaches in terms of how they moved forward with their lives. I think it was on NPR.
Hope that helps. Don't be a stranger. And as Red Green says, I'm pullin' for ya.
KillerLag 2 points 6y ago
Sorry to hear about your condition. Ushers is not an easy diagnosis, unfortunately.
Have you contacted your local agency to start training on skills you would need as your vision loss advances? Things like Daily Living Skills, Orientation and Mobilty, Technology, etc.
Sometimes, the tools you need to do what you want don't exist. You need to evaluate what your skills are, and how to build those tools to allow you to do what you want to do. I saw a TED Talk earlier this year of a blind astronomer. Most people will think, "Wait, don't you need to see the stars to do astronomy?" Well, her speciality was gamma-ray bursts... which are not visible anyways. She worked with some colleagues to develop software that allowed the light curves to be translated into sound.
(Link if you want to learn more: https://www.ted.com/talks/wanda_diaz_merced_how_a_blind_astronomer_found_a_way_to_hear_the_stars)
In a similiar manner, infectious diseases are usually small enough to be not visible. You need tools to magnify them and some of those tools can be adapted. If I'm not mistaken, they already have microscopes that can automatically count stuff they are looking at. Instead of a visible display, you need something that can auditorily read it out for you. I know someone with RP that works in the field of research, and he was able to get some stuff adapted (although I think he did a lot of computer stuff).
One of the biggest things that will help you will be to find a mentor. Someone to help guide you through the path, and knows what things are coming up that could be a problem for you. With that heads-up, your responsibility would be to figure out how to adapt your equipment and prepare your skills for that inevitable challenge. It might be as simple as learning to use adaptive technology to read off numbers, or as difficult as memorizing stacks and stacks of legal briefs.
An article you might find interesting.
https://www.thestar.com/news/gta/2016/10/24/blind-workers-teach-employers-to-see-the-bigger-picture.html
I would suggest you read the entire thing, but focus on Mahadeo Sukhai. He is a cancer researcher here in Toronto. If you can try to contact him, he may have some suggestions that are more specific for you.
Good luck!
Have you contacted your local agency to start training on skills you would need as your vision loss advances? Things like Daily Living Skills, Orientation and Mobilty, Technology, etc.
Sometimes, the tools you need to do what you want don't exist. You need to evaluate what your skills are, and how to build those tools to allow you to do what you want to do. I saw a TED Talk earlier this year of a blind astronomer. Most people will think, "Wait, don't you need to see the stars to do astronomy?" Well, her speciality was gamma-ray bursts... which are not visible anyways. She worked with some colleagues to develop software that allowed the light curves to be translated into sound.
(Link if you want to learn more: https://www.ted.com/talks/wanda_diaz_merced_how_a_blind_astronomer_found_a_way_to_hear_the_stars)
In a similiar manner, infectious diseases are usually small enough to be not visible. You need tools to magnify them and some of those tools can be adapted. If I'm not mistaken, they already have microscopes that can automatically count stuff they are looking at. Instead of a visible display, you need something that can auditorily read it out for you. I know someone with RP that works in the field of research, and he was able to get some stuff adapted (although I think he did a lot of computer stuff).
One of the biggest things that will help you will be to find a mentor. Someone to help guide you through the path, and knows what things are coming up that could be a problem for you. With that heads-up, your responsibility would be to figure out how to adapt your equipment and prepare your skills for that inevitable challenge. It might be as simple as learning to use adaptive technology to read off numbers, or as difficult as memorizing stacks and stacks of legal briefs.
An article you might find interesting.
https://www.thestar.com/news/gta/2016/10/24/blind-workers-teach-employers-to-see-the-bigger-picture.html
I would suggest you read the entire thing, but focus on Mahadeo Sukhai. He is a cancer researcher here in Toronto. If you can try to contact him, he may have some suggestions that are more specific for you.
Good luck!
trippyellipses [OP] 1 points 6y ago
Thank you so much, all, for your incredible wisdom. Just so you ALL know, little things like this matter to people like myself and others alike. I truly believe when we work together as a team, not one may succeed, but we all do. It had warm my heart to read such messages and in time, there will be a point where I hear them. It is an absolute honor to know people like you all exist within this world. Although dark times come, it's people like you who brighten the darken path before me. Thank you so much. ❤
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