Achromatopsia

I have a genetic sight condition called Rod Monochromatism, which is a form of Achromatopsia. I thought i'd take the opportunity while lockdown has slowed everything down, to tell you more about it. There's lots more info online if your interested in finding out more. If you have difficulty with your sight Check out your local area for vision based support and charity groups and if your in the UK the RNIB work nationally www.rnib.org.uk

[@Sahnequeen]

I always found achromatopsia fascinating, but hard to imagine. Thanks for explain it, I think this is the best way to get more information. bless U

[@jackgrant3500]

I have it as well. Thank you for posting. Really interesting to hear another person's story.

[@hooklineblinker1285]

Hi Jack, thanks mate. Are you on any Achromatopsia related groups ?

[@katulalah]

Hello there, thank you for the video. My son who is only 9 months old has been genetically diagnosed for Achromatopsia recently. As it is such a rare condition, it is hard to find many people stories, especially when coming from such a small country as we do (Czech Republic). So thanks a lot, any piece of information on how it is like to live with such condition is very helpful. I do have a question though. You have not mention if you are able to do any sports. For example running, riding a bike, skiing? Or collective sports like football, tennis etc? In your opinion and from your personal experience, is it better to try to teach a child everything (with some limitations) or is it better to focus on things he is most capable of doing? Cheers

[@hooklineblinker1285]

Hi. I'm glad you found it useful. I've been meaning to revisit this video and do another with anything I missed or that's changed over the last few years. When it comes to sports, I find ball sports difficult. But I'd suggest just letting your child explore different sports and interests and see how they go. It's a condition that slightly differs person to person. All the best.

[@mohbro1]

I have the one with light sensitivity

[@jesicamorales4108]

My daughter just got diagnosed on Monday 🥺🥺

[@hooklineblinker1285]

I'm glad to hear she's actualy got a diagnosis, there are lots of people out there waiting for one, or that don't even know they have a condition. There's lots of info and people to talk to out there, it can be hard but it shouldn't stop her enjoying her self and following her dreams.

[@borkodrobnjak3233]

Hey buddy ,i don't have condition but i am here to educate myself, achromatopsia really fascinating me 😃 Can you imagine color if i tell you ; Red is like a fire 🔥 Blue is like sky or ocean ☁️ 🌊 Green is like spring 🌿 Yellow is like really warm color 🌼 Pink is like fun and really girly 💗 Brown is like when you eat food you don't like 😆 Purple is really hard to explain but it's like girly blue color idk man haha 😄

[@whohu]

kiddo

[@Zurvus]

Hello I’m 16 years old I got it as well I had a few questions if you don’t mind me asking is getting a drivers or motorcycle license possible and how would transportation work?

[@hooklineblinker1285]

Hi. So I live in the UK. Here you wouldn't be able to drive, this is down to the detailed vision and not being able to read a car reg plate from the required distance as part of a driving test. I use a lot of public transport, there are pretty good links where I live and as long as you plan your journey ahead you'll be fine.