A Story of Achromatopsia

A Patient talks about the struggle of Achromatopsia, and how he overcame it.

[@brookedanielle3313]

I have this condition. It can be hard sometimes but that doesn't stop me from trying. Sometimes I wish I had normal eyes but then I realize that things like that won't happen. I can't imagine not going outside without my sunglasses and one of my parents holding on to me. I know as I get older there will be much harder obsticals to overcome like driving. Matching my own outfits, getting a job and haveing a family who will help me and except that I have a disorder. It's nice to know that there are other people out there who suffer the same things that I do. I'm so blessed that there is enough Technology to just help me get through the day.

[@corinnanittmann]

DancerDani405 how old are you?

[@kylevillagomez9475]

DancerDani405 Hang in there man it can be challenging. Thankfully my mother raised me to take care of myself to navigate with my other senses and how to help myself. I have a job can take care of myself and most people don't even realize i have any disease at all. You have to adapt and find ways to either get around, help yourself, or gain the courage to ask for help when needed. It can be hard explaining over and over to people why you squint and blink so often even on forecast days or why you wear sunglasses when it's not bright outside but Independence is a sweet sweet feeling.

[@shototodoroki3543]

I'm sorry to hear that your mom smoked while she was pregnant with you... I'M SO GLAD I HAVE PERFECTLY NORMAL VISION!

[@timetraveler9518]

​@@shototodoroki3543 that person never mentioned anything like that. Be respectful to people or the things that you have will disappear.

[@its_lucky252]

wait so like you've never seen a color?

[@TheMaskman74]

This has happened to me 1 time after I got in a car accident. I had a laceration to my right eye brow and lost alot of blood. When I was released from the ER headed home my eye sight completely lost all senses of color for almost 2 minutes and then I regained the sight of colors as before. One of the scariest and real moments I've experienced. I thought I was dead like a out of body experience.

[@shototodoroki3543]

Could’ve been worse.. you’re lucky

[@4ntifreez]

that sounds freaky

[@susiecanuck]

Thank you so much for helping me to understand this condition. My daughter-in-law is very patient but I know she is bombarded with questions daily. Another tip for those of you who are near to someone with Achromatopsia --- avoid birthday and Christmas gifts that amplify his/her needs. Don't give one more vision aid.

[@shototodoroki3543]

I'M SO GLAD I HAVE PERFECTLY NORMAL VISION! Couldn't imagine a world without color, it'd be worse than a world without sound..

[@sigurlauggisladottir2652]

I have 3 sons with Achromatopsia . They work and go where ever they want, go on a bike but are not alow to drive. Sorry my englis writing its not good.

[@UdodaTube]

I actually dig the glasses in that photo clip, they look like a prototype VR but smaller on the eyes

[@sheisthequeen4439]

this as been great, my son has it to he is 7 years old, he can ride his bike, I'm hoping he can drive a car now ive listened to this story, thank you x

[@shototodoroki3543]

This is what happens when you smoke while pregnant.. keep your son off the road for his safety. Even if he crashes nothing of value would be lost.

[@shototodoroki3543]

You must have shit genes.

[@sheisthequeen4439]

@@shototodoroki3543 google genetics dumbass instead of watching anime and serial killers documentaries 😂😂😂😂😂

[@shototodoroki3543]

@@sheisthequeen4439 I'm assuming you live in Alabama?

[@shototodoroki3543]

That's probably why your genes are so bad.. Maybe your great grandparents were cousins.. 😂

[@xovux]

Congrats to the person on the video. You have been very strong :) I hope achromatopsia patients find this video.

[@drunkensailor775]

Man talking about my life, almost word to word... Now i have to think where would i get such lenses in Russia.

[@mariefourmi]

Im a 25 year old and I have this condition. I would LOVE to have some more input on driving... who did you first go to? Who taught you how to drive? How do I know if my corrected vision will allow me to drive? Is the bioptic lens helpful without being obstructive? So many question.... Thanks for posting this video.

[@prashansakoirala8562]

It was great hearing that someone in the world is like me.. i seriously feel frustrated with my condition ... u hab expressed each word as i feel.. i am 18 and i would like to know what carrer can i choose and will i get any job in my future?? This haunts me everytime .... :'(

[@poodleeyes4731]

I'm 19 and facing the same issues. finding a job when you just don't have the vision to do so many of them as effectively as others is tricky to say the least. Personally I'm looking at jobs that I know I excel at, or jobs that require minimum vision. For example, I am hoping to go into counseling, and I am also hoping to get a guide dog to help me get around on my own, since my vision is way to low for driving. If you ever want to talk, feel free to PM me. I have found that living with Achromatopsia is learning what your vision does and doesn't allow you to do, and using what you can do to your advantage.

[@JamesCarmichael]

I got this too, its hard living with it.

[@kirkmcclean9686]

also everyone commenting. I live in San Antonio Texas and it would be amazing to meet someone with achromatopsia like me. message me if your anywhere near San Antonio or city's around San Antonio.

[@karlinwhite9762]

kirk mcclean I live no where near you 😂 but I have it.

[@V0rdan]

I suffer from this illness too, it's interesting to reed all theese comments from different people like me even if i've never met someone in real life who has this condition

[@kirkmcclean9686]

I also have achromatopsia. I'm a senior in college and I'm about to graduate. I'm really interested in what you call the bioptic? what is your vision without it? and what does your vision go with it?

[@kylevillagomez9475]

kirk mcclean Hey man how's college for you. School was never easy for me not being able to see the chalk board having to ask other kids for help sometimes it was hell. I tried college for awhile but i couldn't get the hang of it. I was wondering how you fare and the strategies you use to get around.

[@JamesCarmichael]

@butterknucket i got it too. I'm starting a Raw Food diet to try and help with my condition. A lot of people say they've experienced complete healing from loads of diseases and conditions. Do a search on youtube.I also hear stem cell research is the hot new thing from all sorts of eye problems.

[@JamesCarmichael]

@Commonwealth96 Not really. We're born without colour so in a way, we can't miss something we've never had.

[@mino2009]

Anyone married or having a relationship with an achromat? I like this guy who is an achromat. When I told him that I fancied him he laughed and I dont think he believed me. I think he just thought I was making fun of him =(

[@kylevillagomez9475]

mino2009 How's the relationship going. I know this comment's years old but was curious. I also have achromatopsia and relationships are a challenge to say the least. Telling anyone you have it is nerve racking. Sometimes you feel like less of a man because you can't do things men are expected to do.

[@shototodoroki3543]

@@kylevillagomez9475 Sad life, I'm sorry your mother smoked with you in the womb.. Even if you crash, nothing of value would be lost. I'M SO GLAD I HAVE PERFECTLY NORMAL VISION! Couldn't imagine a world without color, it'd be worse than a world without sound..

[@shototodoroki3543]

Don't date impaired people, hope you broke up before kids came in the picture and inherited those shitty genes.

[@korbinking4567]

@@shototodoroki3543 do you know how genetics work 🤣🤣 I see you bulling people in these comments but half the things you saying you don't have a clue about. I suggest you Google how genetics can work and colourblindness works. someone can have this gene but it doesn't mean there child can also get it. if you stop bullying people and do research first you might sound like you know what you talking about. Y.S.D.A.F.Y.L

[@Commonwealth96]

That must suck to not see color...

[@mohajust]

god bless you brother

[@shototodoroki3543]

God isn’t real

[@cheesebro7178]

Come on don’t be like that

[@shiningemeralds8024]

I am so sorry for people with this condition I feel so bad but I could tell you um.. Kinda what real life looks like so green is like.... The colour of the ground and yellow is the brightest colour with orange into it and then white which is the brightest and then there is blue the colour of the water and sky and then... Umm... I just feel sorry for you people... I hope that there is a way for you like colour blind hisses but Indont know if that exists for achromatopsia so yeah

[@panzerkampfwagenvi6996]

Achromatopsy black eyed guy with gray hair wears black clothes...

[@TheSannySide]

Only sunglasses and no colours would be fine by me ... can't have a drivers licence, can't get a job without telling them cause otherwise they can sue me and so on ...

[@shototodoroki3543]

Sad life, I'm sorry your mother smoked with you in the womb.. Even if you crash, nothing of value would be lost. I'M SO GLAD I HAVE PERFECTLY NORMAL VISION! Couldn't imagine a world without color, it'd be worse than a world without sound..

[@TheSannySide]

@@shototodoroki3543 were did that smoking thought come from? What I have is called achromatopsia meaning both my parents have the gene for it and I had therefor a 50/50 chance of getting it (they didnt know unfortunately and it affects about 1:100.000 people in my country)

[@shototodoroki3543]

@@TheSannySide LOL, even worse! If your parents had sex a few minutes earlier or a few minutes later, chances are you would've been a completely normal person with nothing holding you back from succeeding in life. Who knows, maybe you could've started a business by now, maybe you would have a wife and 2 kids by now.. But too bad, you lost. Now you're that one special ed kid in class that never accomplishes anything in life.

[@AD31......]

Iam writing a story about this..

[@fuckaverageusers]

is this how they see everything?

[@placeboevi]

Omg same experiences as me

[@orlaxxx100]

I have it also

[@shototodoroki3543]

Sad life, I'm sorry your mother smoked with you in the womb.. Even if you crash, nothing of value would be lost. I'M SO GLAD I HAVE PERFECTLY NORMAL VISION! Couldn't imagine a world without color, it'd be worse than a world without sound..

[@Cutirimicuador]

Que Pinche Desgracia . . .

[@fuckaverageusers]

is this how they see everything? achromatopsic period wordpress period com