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  • Living with Retinitis Pigmentosa

    Vision impairment isn’t a topic that I’ve felt particularly confident in talking about, ever if I’m honest. But, as I continue to grow up, my confidence is slowly growing and I want to make as much effort as possible to raise awareness of disability, vision impairment in particular and this is why I’ve decided to share my story on my blog.

    I know what you’re probably thinking – vision impairment, what a boring topic, right? Well, I’m going to try my best to counteract that view and hopefully make it as entertaining as possible as I write more content online. Granted, this post isn’t the most exciting to begin with but I can’t start talking about my experiences without giving a little background and context to kick us off.

    As you can guess from the title, I have a condition called Retinitis Pigmentosa, an eye disease which I was diagnosed with at the age of six.

    My parents started to notice something wasn’t quite right when I was about three years old so from that point I was going back and forth to hospital until I was finally diagnosed three years later. Retinitis Pigmentosa (RP for short) was quite a rare disease at the time and this is why it took over three years for me to get a formal diagnosis.

    When I was first diagnosed I was registered as being Partially sighted but as the years have gone by, my vision has deteriorated and I was registered blind/severely sight impaired at the age of twelve.

    I am sixteen now and I still have some remaining 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 can be quite embarrassing if I’m out in public, but I’ve learned to laugh about it, if you can’t laugh at yourself then who can, eh?

    I started learning braille when I was at primary school and have now learnt it in three languages – Welsh, English and French. Braille is a code, if you will, 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 which means that not as many people learn braille since it’s easier to use the magnification or screen reader on a computer.

    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 too self-conscious about it. Although, I am going to start using it again to see if it might boost my confidence in terms of going out independently.

    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. As you can imagine this is very scary and it’s the time of day when I feel most anxious.

    That’s just a small glimpse of how RP affects my life, but you can expect a lot more stories which are hopefully more entertaining. I have plenty of embarrassing, awkward and funny moments to share with you!

    I hope by sharing my experiences, I can help to educate people on subjects such as vision impairment and I hope I can help to tackle the stigmas that surround it. I also hope I can spread positivity to others who are going through something similar to me and that we can all, in time, benefit from hearing each other’s stories.

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    7 Comments

    1. elzthebelz
      May 25, 2016 / 4:20 pm

      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?

      • May 26, 2016 / 6:06 am

        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 🙂

        • elzthebelz
          May 26, 2016 / 8:39 pm

          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.

          • May 26, 2016 / 9:21 pm

            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.

            • elzthebelz
              May 26, 2016 / 9:44 pm

              :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.

            • May 27, 2016 / 6:10 am

              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.

    2. megan fox
      May 22, 2018 / 12:09 pm

      I was diagnosed with Parkinson’s disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Madida Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease. Visit http://www.madidaherbalcenter.weebly.com or email madidaherbalcenter@gmail.com. The treatment worked incredibly for my Parkinsons disease, i have a total decline in symptoms including tremors, stiffness, slow movement and others.

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