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.

Get to know me!

Hello everyone!

Welcome to my blog!

For my first post I thought I’d do a get to know me kind of post so you can get to know me better!

So first, I am a 16 year old visually impaired girl. I have a passion for beauty and fashion and I love music. I have actually composed over 60 songs! But I’ve never played them to anyone as I’m scared no one will like them!

I also have a love of photography and I express this on my instagram account @myblurredworld.

I also suffer with anxiety and panic attacks so I might do a blog post about that, if that’s something you would like?

So to finish off this post, here are five facts about me :
1. I have one brother
2. My favourite colour is turquoise
3. I love being outside
4. My favourite singers are Taylor Swift, Ed Sheeran and Sam Smith
5. I play the piano, harp, guitar, electric guitar and a little of the ukulele.

So there you go, my first blog post done! I hope you enjoyed this litle introduction to my blog. And I hope you like my future posts. I look forward to meet you all and to maybe make some more internet friends.

I hope you all have a lovely Easter weekend! Goodbye for now