Blindness misconceptions, stigma, + advice (Rod Cone Dystrophy)

Thank you for watching! Could you relate to anything I’ve said? Have I missed out any misconceptions? What bothers you about the stigma? AND have you ever felt like you had been accused of not having an illness as it’s not visible? Let’s keep this discussion going! Love to all my blind pals out there! Please don’t forget to SUBSCRIBE and turn your post notifications on! Thank you for watching and for the support! HAVVA x

My son was diagnosed 12 years ago at the age of 32. He is currently in a correctional facility and it is positively shameful the way he is treated because of the ignorance of the staff. The resistance of the staff to allow him to use his stick, the name calling (Stevie Wonder, Ray Charles references), guards waving their hands in front of his face - reprehensible behavior. He has faced this adversity almost since his diagnosis, but it has become 100 times greater in prison and, as his mother, it is soul crushing for me. Anyway, thank you so very much for this video. It could have been made by my son.

I really appreciate you taking the time and heart to state this all so clearly

nice video. People needs to be educated about blindness. I am legally blind and once I was walking to the store and a woman stoped me and asked, are you looking for gold whith that? Of course she was talking about my cane. I smile and said I am blind, I need it to find my way. This experience surprise me how uninformed is people about blindness and the accessories that a blind person needs.

Hey there! There aren’t many videos about Rod-Cone Dystrophy so thanks for posting this! I saw your post on the Cone Dystrophy Facebook page. I have had Cone Dystrophy since very young and I haven’t met anyone else with this condition. About the misconceptions... YES! It drives me insane when people ask “Have you tried glasses or surgery?” My Mom still thinks that an eye transplant could be done to fix everything 😳 It’s been difficult but I am so thankful for the sight I do have. Again, thanks for your video, makes me feel like I’m not alone in this!

So sorry that you have this terrible disease, especially at such a young age! I also have Cone dystrophy, but fortunately for me I didn’t get diagnosed until I was 50yrs old. I can’t drive anymore and can barely read my phone. Best wishes and prayers for you!

As bothersome as it can be to get criticism from strangers it can be even more difficult to get it from friends and family. Like you said however no one can see through anyone’s eyes, so that’s the unfortunate part about it where they can’t understand.

I am also having rod Coen dystrophy since birth..I can completely understand

even my own family question my disability. They are constantly checking if I can’t really see. Here is another wrong perception about blindness. People believed that if you are blind you are destine to beg. I bring that up because I have been called coin begger many time.

I was diagnosed with rod cone dystrophy today. It was totally unexpected, after getting an OCT scan to check for Glaucoma. What resources did you use to learn about the condition?

Thank you for providing this type of video my name is Anthony I am totally blind as well I just subscribed to your channel, I do collaborations and I think that this is a very well put together an educated video that can help others, if you are interested in collaborating please let me know