So, I'm 24 and I have developed an unknown retinal degenerative disorder. In my case, the central and peripheral vision is affected but it's currently mostly in my right eye and the vision between the macular and peripheral is still somewhat okay. Anyways, the tunnel vision is kind of hard to describe. I can't see anything real in these blind spots, for example if there is movement or an object there, I just can't see it at all. However, I still "see" stuff in these blind spots. It's not real imagery but I guess it's hallucinations that help fill the visual void. These blind spots regularly flicker and have weird patterns and shapes moving through them, kind of like if you rub your eyes a little too hard. Excellent video by the way!
Thanks for sharing your story Tobes ! My sister in law is becoming blind as an adult due to an accident. Her diagnosis sounds very similar to your RP description, so for me it is particularly interesting to understand some of the phases you went through, both physically and mentally. Also thumbs up to you (and I suppose your gf) for putting these together and acting as a model for others.
Your positivity about your condition is honestly inspiring. You’re a role model for everyone, sighted or not. If everyone (myself included) could be a bit more like you in our outlook and approach, the world would be a better place. I’ll be trying to channel my inner-Tobes more from here on out.
Very interesting. I have had RP since birth actually, but it wasn’t formally diagnosed until I was about three-ish when I got my first pair of glasses. Wow. It’s like I knew you were going to say RP before you said it. So many don’t even know what it is and it’s amazing to meet someone with this who is also able to find a way to cope, much like I try to do. More power to you and much love from across the pond!
Great video! Great to hear your story. I can relate to the lashing out and getting angry! I still flip a lid when I walk into stuff now. Nice call out to Molly Burke too! You and her were probably the first two ppl I found online recently while looking for other people with RP. Looking forward to more videos! I’m 36 but I am currently looking up to you because of the positive message you are putting out there and how you come across is inspiring…. And you are pretty funny as well mate 😂 keep the humour 🫡
