Blind and Visually Impaired Community
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Retinitis Pigmentosa (self.Blind)
submitted by FlyPrinc3
Guys , I'm more of a newbie to reddit so please be kind. This is gonna be more of a personal post. I'm a 20 year old who has been diagnosed with **retinitis pigmentosa** a couple days back. Since then , I've not been able to stop freaking out. I'd like to think of me as one of those people who are crazy enough to think they can change the world.
This is more like one of the most crucial times of my life because I have my Start-up coming up and I have been putting efforts to achieve my dream of becoming an athlete. Usually , when I've been backed into a corner with some difficult situations like these , I could pull myself up. But this has got me stuck.
I've been putting aside a lot of hurtful memories thinking that I can overcome them later. But now that this happened , all of those traumatic moments came crashing down to my mind and I'm collapsing. This has made it hard for me to think normal. I've had difficulties seeing at night and deep inside , I always felt like there was not gonna be any cure for this. But knowing that I might loose my vision completely has made it worse for me.
Hearing them doctors say "Just Pray to God" scattered me all over the place. I just couldn't pull myself to even believe there is God. Just left me devastated.
They said I must have inherited this from my mother. She has 5 siblings out of which three are affected by this (including my mom). The other two people are completely blind now while my mom is able to see well in the night times. Infact , she's been driving for like 16 years now. I don't know how I inherited this from her but it seems like I might end up blind too just like the other two siblings she has.
I don't know why I made this post but if you can say something good , please do. Might go a long way in making me get back on my feet. Thanks in advance.
This is more like one of the most crucial times of my life because I have my Start-up coming up and I have been putting efforts to achieve my dream of becoming an athlete. Usually , when I've been backed into a corner with some difficult situations like these , I could pull myself up. But this has got me stuck.
I've been putting aside a lot of hurtful memories thinking that I can overcome them later. But now that this happened , all of those traumatic moments came crashing down to my mind and I'm collapsing. This has made it hard for me to think normal. I've had difficulties seeing at night and deep inside , I always felt like there was not gonna be any cure for this. But knowing that I might loose my vision completely has made it worse for me.
Hearing them doctors say "Just Pray to God" scattered me all over the place. I just couldn't pull myself to even believe there is God. Just left me devastated.
They said I must have inherited this from my mother. She has 5 siblings out of which three are affected by this (including my mom). The other two people are completely blind now while my mom is able to see well in the night times. Infact , she's been driving for like 16 years now. I don't know how I inherited this from her but it seems like I might end up blind too just like the other two siblings she has.
I don't know why I made this post but if you can say something good , please do. Might go a long way in making me get back on my feet. Thanks in advance.
OldManOnFire 10 points 1y ago
I was just diagnosed with RP two months ago. Whatever kind I have is rare enough that the genetic testing proved inconclusive. It was considerate enough to wait until I was in my 50s to manifest itself, but my sight is deteriorating much faster than what most RP patients experience. I probably have a year or so before total blindness sets in. The late onset makes the doctors think it's dominant instead of recessive, meaning my kids have a high chance of inheriting this. But other than that I'm okay with it. I've seen my grandchildren. I've proved what I had to prove in two different careers. My wife is amazingly supportive and the teenagers still living at home love to drive me around. I realize I'm lucky - if this had happened a decade or two ago when my paycheck was how the family survived going blind would have been a severe hardship. Now it's just severely inconvenient.
My wife and I still go dancing at the 80s club. We just have to dance holding hands. I still waterski. As long as the boat pilot can see the person skiing doesn't have to. We still ride bikes, except now it's a tandem bike. We've found ways to adapt.
The point is there's hope. Going blind may change what you can do but it doesn't change who you are. You're still loved. You're still a good person. You're still going to make the world a better place. The details will change, of course, but your dreams don't have to.
My wife and I still go dancing at the 80s club. We just have to dance holding hands. I still waterski. As long as the boat pilot can see the person skiing doesn't have to. We still ride bikes, except now it's a tandem bike. We've found ways to adapt.
The point is there's hope. Going blind may change what you can do but it doesn't change who you are. You're still loved. You're still a good person. You're still going to make the world a better place. The details will change, of course, but your dreams don't have to.
FlyPrinc3 [OP] 2 points 1y ago
Warms my heart to see you being happy! I hope you stay the same always. Thank you so much :)
OldManOnFire 2 points 1y ago
My DMs are always open to you, bro.
FaerilyRowanwind 8 points 1y ago
I can’t do anything but offer a hug and tell you to look into training and services. And get some counseling
FlyPrinc3 [OP] 2 points 1y ago
I understand. Sure I will get some counselling. Thank you so much!
FaerilyRowanwind 3 points 1y ago
And if you need someone to talk to my dm are open anything.
ChangeAcrobatic4632 5 points 1y ago
Hi buddy, I also have retinitis pigmentosa. I am 18, and I am far along in the progression. I found out a few months ago, if you ever want to talk, rant, or befriend someone with an identical understanding as you, I am always free. :) Trust me, over the next couple months, you will start to feel a little bit better.
FlyPrinc3 [OP] 1 points 1y ago
Sure! Thank you so much for your kind words!
tree_trunks96 4 points 1y ago
Hi OP, my mum has RP and by what you say, I think she was in the same place as you at your age more or less. She decided to try anything she wasn't confident in, learned to type & use technology, attended various courses, learned of and received support from local sensory services (such as long cane training) & is such an incredibly independent person. Her only regrets are not trying things sooner! In my perspective, she's a normal mum and has provided me with everything I could have hoped for and more as a mother and best friend.
There truly is nothing that you cannot do due to low vision. It takes a lot of research, testing, practice and patience but you have full capability to do anything you want. In the UK we have a lot of schemes such as Access to Work who provide equipment needed at workplaces, charitable grants to help acquire expensive equipment, local statutory sensory services and local charities for blind & partially sighted people. I am sure similar things will exist wherever you are.
My mum did also have genetic testing to determine what kind of RP she has so we did learn that me and my brother are carriers. We're asymptomatic and have the potential to pass RP onto our children if our partners are also carriers - but my brother and I couldn't care less. We know our mum lives a fulfilling and happy life, and has always gone out and done whatever she's been interested in trying. There is support available to do whatever you want to do, society & technology is progressing in our favour and at the very least, a support network of family/friends goes a very long way.
Kindest wishes
There truly is nothing that you cannot do due to low vision. It takes a lot of research, testing, practice and patience but you have full capability to do anything you want. In the UK we have a lot of schemes such as Access to Work who provide equipment needed at workplaces, charitable grants to help acquire expensive equipment, local statutory sensory services and local charities for blind & partially sighted people. I am sure similar things will exist wherever you are.
My mum did also have genetic testing to determine what kind of RP she has so we did learn that me and my brother are carriers. We're asymptomatic and have the potential to pass RP onto our children if our partners are also carriers - but my brother and I couldn't care less. We know our mum lives a fulfilling and happy life, and has always gone out and done whatever she's been interested in trying. There is support available to do whatever you want to do, society & technology is progressing in our favour and at the very least, a support network of family/friends goes a very long way.
Kindest wishes
FlyPrinc3 [OP] 2 points 1y ago
Wow. Damnnnnnn! Reading this made me so emotional. Salute to your mother for being so cool and awesome! This did a pretty good job in restoring my hope. And yes , the time is on our side when it comes to the cure and technology ig. I hope you guys have a great and happy life! Thank you so much for your kind words! Really inspiring!
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FlyPrinc3 [OP] 1 points 1y ago
So cool! Reading this made me giggle a little (in a good way). You have a great story-telling ability ig XD Btw , thank you so much for your kind words!
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FlyPrinc3 [OP] 2 points 1y ago
Yes! Just what I was looking for! Damn right I'll chase my dreams! Thank you so much.
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FlyPrinc3 [OP] 3 points 1y ago
Thank you so much. This meant a lot to me and gave me some hope. I wish you have a great life ahead!
True_Candyman 3 points 1y ago
Progression is generally slow with RP, so you'll be fine for most of your life.
That means you've got time to prepare for it, learning braille and such, and a nice smooth transition.
Theres also more to do in the world than you can ever hope to actually experience. Something like this can focus you. Take advantage of what you can whilst you have good sight, and adjust that and experience new things, prepare for more secure work long term when you do lose more sight.
It's all very long term. Everyone has some condition they have to deal with - you can still live a long and happy life with limited vision.
Be positive! Look for the things you want to do, not the things you've theoretically lost
That means you've got time to prepare for it, learning braille and such, and a nice smooth transition.
Theres also more to do in the world than you can ever hope to actually experience. Something like this can focus you. Take advantage of what you can whilst you have good sight, and adjust that and experience new things, prepare for more secure work long term when you do lose more sight.
It's all very long term. Everyone has some condition they have to deal with - you can still live a long and happy life with limited vision.
Be positive! Look for the things you want to do, not the things you've theoretically lost
FlyPrinc3 [OP] 2 points 1y ago
Reading this made me feel like it's not much of a bad thing that's happening to me. I hope you have a good life! Thank you so much!
LyingSlider7 3 points 1y ago
I am 15 years old and my whole life my right eye has been blind due to retinal detachment and my left eye retina was saved and that I was visually impaired for my whole life up until this year I’m now 15 and fully blind but I already know boil and how do use a cane so I have adapted pretty well but honestly man it’s not that bad I still live my life and enjoy it and Stella learn new things so just keep your head up if a 15-year-old can figure it out so can you
FlyPrinc3 [OP] 1 points 1y ago
Yes. Right. So inspiring to read this! I hope you enjoy your life to the fullest and stay happy always! Thank you so much for your kind words!
kescba 3 points 1y ago
I understand your frustation, mostly because i also have RP. It could sound like the same type as well. In my family i also got it from my mom. If i get kids, then i should kill RP if it's a boy, but if i get a girl i would give her the RP gene, not that she would get RP; but her son would then get it. Luckily for me, i have a son, now 5 years old with no health related issues.
Today im 31 years old, and was diagnosticed when i was 10 years old so i have had plenty of time to hate it, me and from time god and the world.
Im not much for religion, but i do enjoy fitness, running and so on. My best frined is my cane, because it helps me, especially during the night time. People are always so kind and helpful when they see it so i use it all the time, it also saves me from many accidents.
You can continue becoming an athlete, but maby you should consider the para olympics?
When that is said, the is threatments on the way and i think the time is on your side, so my best suggestion is to stop being frustrated, especially because this might harm your eyes even more.
Best wishes and hopes for you ;-)
Today im 31 years old, and was diagnosticed when i was 10 years old so i have had plenty of time to hate it, me and from time god and the world.
Im not much for religion, but i do enjoy fitness, running and so on. My best frined is my cane, because it helps me, especially during the night time. People are always so kind and helpful when they see it so i use it all the time, it also saves me from many accidents.
You can continue becoming an athlete, but maby you should consider the para olympics?
When that is said, the is threatments on the way and i think the time is on your side, so my best suggestion is to stop being frustrated, especially because this might harm your eyes even more.
Best wishes and hopes for you ;-)
FlyPrinc3 [OP] 3 points 1y ago
Kinder words have never been spoken. Made me emotional. Congratulations on your healthy son! Thank you so much for restoring some hope in me!
kescba 3 points 1y ago
When ever you need it man ;-)
Theres always hope, but as visually impared it's even harder to see or imagine (Something people with vision could learn a lot from) :-)
Theres always hope, but as visually impared it's even harder to see or imagine (Something people with vision could learn a lot from) :-)
DaaxD 2 points 1y ago
Learning that you have a RP can be tough, but it isn't the end of the world. Actually, depedning on how your case progresses, you could still have decades left before your RP actually starts to hinder your life. And even after that, becoming blind isn't the end of things.
I personally found some solace by thinking that I was just dealt a shitty hand, but quitting isn't an option. The only way forward is to make most of my shitty hand and see how far it can get me.
You didn't mention what your start up was all about or what kind of athletic aspirations you had, but I'm quite sure the start up can still work out just fine. You probably will need to adjust your atheltic goals, but at least you don't need to give up completely. Again, it might be more fruitful to think about what *can* you do, instead of feeling sorry about things you can no longer too.
What comes to cures or treatments, the new developments in the CRISPR technology and stem celll research does look promising. However, the researchers have been saying that "the treatment is in 10 years away" for several decades now, so I'm personally saving my enthusiasm to the day when I'm invited to such a trial.
I personally found some solace by thinking that I was just dealt a shitty hand, but quitting isn't an option. The only way forward is to make most of my shitty hand and see how far it can get me.
You didn't mention what your start up was all about or what kind of athletic aspirations you had, but I'm quite sure the start up can still work out just fine. You probably will need to adjust your atheltic goals, but at least you don't need to give up completely. Again, it might be more fruitful to think about what *can* you do, instead of feeling sorry about things you can no longer too.
What comes to cures or treatments, the new developments in the CRISPR technology and stem celll research does look promising. However, the researchers have been saying that "the treatment is in 10 years away" for several decades now, so I'm personally saving my enthusiasm to the day when I'm invited to such a trial.
FlyPrinc3 [OP] 3 points 1y ago
It's a service based startup and am a sprinter. Btw , thank you so damn much for your insight on this. Feels good to know about the whole CRISPR technology. Count me in for saving the enthusiasm.
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