Living with Retinitis Pigmentosa

Hello everyone!

I hope everyone is well.

Today’s topic is visual impairment. If you didn’t know I am visually impaired and have a condition called Retinitis Pigmentosa (RP).

Today I will talk about my experience with Retintis Pigmentosa and how I deal with it on a daily basis.

Living with this eye disease is very hard but I have to learn to cope with it. I was diagnosed with this disease at the age of six. My parents started to notice something was wrong when I was about three years of age so from the age of three I was going back and forth to hospital but the doctors would never come to a conclusion as to what my condition was. Retinitis Pigmentosa (RP for short) is a very rare disease and this is why it took over three years for me to get diagnosed with this particular condition.

When I was first diagnosed I was registered as being Partially sighted but as the years have gone by my vision has deteriorated and when I was about thirteen years old I was registered as being Blind/Severely Sight Impaired.

I am sixteen now and I still have quite a bit of vision but it is much worse than it was a few years ago.

As a child in primary school I found it very hard to take part in certain activities such as sport because if we would be playing football or whatever I would never be able to see the ball and I would always be scared that it would hit me. I always misjudge where an object is, I might think something is really close to me but it’s actually further than I expected and vice versa. This results in me crashing into objects, which is quite embarrassing if I’m out in public.

I started learning braille at the age of ten and have now learnt it in three languages. Braille is a code in a way which consists of six dots, each with a different meaning and it allows blind/VI people to read and write. Although technology is getting so advanced these days that not many people learn braille nowadays as it’s easier to use the magnification on a computer or a screen reader.

I also learned how to use the white cane whilst in primary school, although I’ve never used it out in public because I’m to self-conscious about it. Although I am going to start using it again to see if it might boost my confidence. (Update : It is now 2017, two years on from the original publication of this post and I now use my cane out in public and feel so much more confident when using it).

Having the condition that I have means that I have night blindness, this means when it’s dark outside or when a room/corridor is dark I go completely blind and I can’t see a thing. As you can imagine this is very scary and it’s the time of day when I feel most anxious.

I think that’s all I have to say for today, if you would like me to do another post about RP then please let me know.

I hope this blog post helped some of you and helped you understand what Retinitis Pigmentosa is.

I would love to hear your opinions about this blog post so please comment them below.

Enjoy the rest of your day.

Until next time.

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9 thoughts on “Living with Retinitis Pigmentosa

  1. Pingback: Growing up with sight loss |

  2. Pingback: Growing up with sight loss | My Blurred World

  3. Pingback: Retinitis Pigmentosa update – My visual impairment | My Blurred World

  4. It must be really frustrating to know that your sight is deteriorating and that there’s very little that the doctors can do to halt it or reverse it. I can’t imagine loosing any usable vision due to lack of light. I can only sympathise slightly as my vision isn’t great in the dark but I’m lucky enough to still be able to see. How do you find your mobility is affected during the winter months when days become darker quicker?

    Liked by 1 person

    • Yes it is very frustrating but at the end of the day I remind myself that there are people out there who reasearch every single day to try to find a cure and I admire them for doing that. I do find my mobility to be difficult in the winter months as the days are generally darker therefore I do find that my vision deteriorates during this time also which makes it even harder. But I do find ways to make it easier. Thank you so much for reading and commenting 🙂

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      • That’s ok me dear. I think it’s nice to be able to share our experiences of visual impairment as we are the ones who can truly understand what it’s like living with impaired vision. What kind of things do you do to help you during the night then? if you don’t mind me asking of course.

        Liked by 1 person

      • I totally agree, it definitely helps to share experiences and communicate with other VI people. And no I don’t mind you asking at all, if I’m out and about at night I always tend to depend on other people who give me sighted guide but I am now trying to use my cane more so i can be a little more independent.

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      • :D. I always prefer people asking questions rather than just making ignorant assumptions and trying to help but just cocking it up. I think knowing what works best for you is always important whether that’s asking for help or challenging yourself and knowing what you feel comfortable with and where ones limitations are.

        Liked by 1 person

      • Yes i do too! I get a lot of people who make assumptions whereas if they’d ask a question before assuming things then they might understand the situation better. And yes that is very true, every individual is different therefore everyone’s way of working is different, some people might prefer using one mobility method rather than the other, I am personally trying to try out different methods of mobility to see what works best for me.

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