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Vision

Vision

Rare Disease Day

February 28, 2019
Rare Disease Day - Picture of Me holding a piece of paper with the words # I Am Rare

A couple of years ago, I never could begin to imagine that I would be writing about rare disease day, but here I am, with my rare disease, explaining to others why February the 28th is such an important day on the calendar.  Background Information Rare disease day was started up by EURORDIS and its Council of National Alliances in 2008, as a European event, but has rapidly grown to establish itself as a worldwide event. It was first held on…

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Vision

Low Vision Awareness Month

February 22, 2019
A clock with the middle portion blurred out due to central vision loss.

February is low vision awareness month, so I thought I would do this blog post explaining some of the terms used when discussing vision loss and blindness. Whenever I tell people I have a problem with my eyes and am losing my central vision, a lot of the time I am asked how that is possible and they would never have known, because I have lovely eyes and they don’t look like there is anything wrong. When we think of…

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Vision

What I See

January 25, 2019
This is a pic of how i can best describe my vision.

I have been asked a lot recently what my vision is like and how I manage to still do my make up so well and read small print. I was diagnosed with Stargardts at the age of 32, so I have the later onset variant with something called foveal sparing (for now) which means that the very centre of my eye is quite clear at the moment. The picture I have posted of my little boy and Loco is the…

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Vision

World Braille Day 2019

January 4, 2019
World braille day image.

Today is world Braille day. On this day in 1809, Louis Braille was born in France. Louis became blind after a childhood accident and when he was 15, he created the system we know today as Braille.  Over the years Braille has been modified to make it easier to read and now it is used world wide. This amazing way of communication used amongst the blind and visually impaired, has enabled independence and accessibility for this community.  World Braille day…

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Lifestyle Vision

A Roundup of my 2018

December 30, 2018

As 2018 draws to an end, it has made me reflect on the year that I have had. When I was diagnosed with Stargardts in 2017, for a good few months it honestly felt like someone had ended my life. I was lost, confused and scared for much of the rest of that year following my diagnosis and I was consumed with the feeling of ‘why me’. I was grateful when my little boy suggested that we do something to…

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Lifestyle Vision

Christmas Memories

December 18, 2018
Thomas Land Pic

I have to be honest and say, I adore Christmas time, December is my favourite month of the year. Last Christmas I felt like I wasted the month by being very disorganised and dwelling on things too much and making myself stressed by trying too much to please others. This year I have already wrapped most of the gifts I have bought people and have decided that it will just be the 3 of us eating at home on Christmas…

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Lifestyle Vision

Fitting In

November 15, 2018
Me looking out at the beautiful view in Croatia.

Sometimes, I just feel like I don’t fit in. This isn’t something new to be honest, struggling with debilitating anxiety from 14 years old onwards, gave me a good taster of what it is like to not feel accepted, or left out when you feel you have no will power to try and get yourself out of the house, or have to make another excuse why you can’t go to a party or meet up with friends. People accepted it,…

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