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Dealing with Retinitis pigmentosa


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Hello there and welcome to the fun times of my countless rants and rambling!


I have a visual impairment called retinitis pigmentosa, the shortened version being RP and it's the most frustrating thing included in my stressful life. Retinitis pigmentosa involves a breakdown and loss of cells in the retina and the common symptoms include difficulty seeing at night and a gradual loss of peripheral vision. RP is a lifelong disability and currently, in the UK which is where I live, there i no cure for it. I've lived with this disability for my whole life and I was diagnosed with RP in December 2016, so not very long ago.


Living with RP is incredibly difficult, especially with the fact that I'm struggling to survive through highschool, surviving through constant bullying and hate my gender, but there are a couple of good aspects to it. If you have a white cane, people tend to get out of your way if they see it and despite there being no cure at the moment, there are multiple ways to help get around this certain disability, such as digital devices or magnifiers. Otherwise, RP is one of the rarer visual impairments and only around 1 in 4000 people can get it, but it is much more dominant in males than it is in females.



Luckily for me, complete blindness is very uncommon until I get much older but my peripheral vision will gradually decrease so it'll get harder for me in the future if that does begin to happen. However, I still have around 80% of my vision currently and it won't be happening for a long time, so that's very good for me. Since my vision is so bad, I rely on my other senses and greatly rely on my touch and hearing, since those are incredibly important since I can't see very well due to my condition. Along with my visual impairment, I could possibly be the first polydactyl in my family (as we know) if the people looking at my genes find it along with all the other terrible things that I could possibly pass on to my children if I ever have any.


And since this has gone on for a good while, this brings my first post to a close. Thank you for reading this or replying if you have done so!

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Hey Oceanwaves101,


Thanks for coming to us with this - we can deffo help you out :)


I'm sorry to hear how frustrating this is for you. I think it's great that you're so open about your struggles. I noticed you said you hate your gender and I was wondering why you feel this way?


I love the way you are looking at the positives of your situation. It's important to remain optimistic as its so easy to get lost in a world of negativity. Although your situation is difficult, I think that you can definitely change how you think about it which you are already doing. As important it is to allow yourself to feel down about it, it's equally as important to look on the plus side. As you said, there are multiple ways to help get around it :)


Do you talk to your friends and family about this? also, maybe you could find a support group for people with this condition if you haven't already. It could be really helpful.


I hope you find my advice useful, let me know if not and we can figure something else out.


Hang in there - Monsoon.


P.S. You're doing a great job! Keep going :-D


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Ah, thank you for noticing this! I didn't realise until now that you did so, thanks.


By hating my gender, I mean I want to be a male. I'm incredibly uncomfortable with being female but I came out to my dad as trans today and he was really cool with it.


I've never met any other teenagers with a visual impairment, all the people with RP that I've met over the time I've been diagnosed with RP, which is about 2 or 3 years, have been adults or elderly people so it'd be wonderful to meet people around my age with similar disabilities. I think I'm the only visually impaired person in my school as well since the only disabled people I meet at my school are either physically disabled or have hearing impairments.


Although I do know visual impairments in young children or teens is rather rare, I tend to deal with it better than most expect since I've had RP for my entire life, as I said earlier. But the team of this site are brilliant and are incredibly nice from what I've seen so far. I do really think this site is the best I've seen so far relating to subjects of this calibre and I think coming here was the best idea, so thank you so much for being so supportive and thank you for the help I've had so far!

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Hey there,


I think it's so great that you came out to your dad. It must have taken a lot of courage - how do you feel about it?


You have a really positive attitude towards your disability. Just remember that it's important to let yourself feel down about the VP when you do rather than trying to cover up your emotions. This can cause a lot of stress to build up and we don't want that. You're doing the right thing by talking about it though - keep it up :)


Have you thought about joining a support group? It could help to meet more people with a VI, or even an online forum for such a cause. Also, thanks for your kind words about our support. We love doing it and it's great to see the positive impact it makes :(


Sending positive vibes -Monsoon :)


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  • 2 weeks later...

At the moment, I feel alright about coming out but I think I might feel pretty awkward when people call me a girl when I don't feel like one which'll be rather frustrating for me. Besides that, he understood the fact that I wanted to be whoever I wanted to be and he was really kind about it so that was really reassuring.


And I don't actually know any support groups or online groups for teens in the UK yet, since my condition is incredibly rare and I only know male adults with RP which is frustrating as my school supports all sorts of disabilities, but unless I use my cane, people tend to forget about my disability since it isn't one of the more clearer ones, which is rather frustrating, as I keep stating in this post, especially in a highschool with over 400 people who go to the same school.

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Thanks for getting back to me. I'm happy it went well for you. I can imagine how awkward that would make somebody feel, but it's bound to happen and it will become less common over time. All for the greater good :)


Sorry that you're having trouble finding a support group specifically for your condition. Do you think you could join a general group for those with visual impairments?


Regarding your school, do you think it could be useful to maybe get the teachers to speak to the pupils? It might help them to be more careful.


Over and out

-Monsoon :)


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