After the sadness of my appointment last Friday, and dealing with the fact that my eyes are progressing, I had totally forgotten our 4D baby scan was booked for the following weekend. At the time, I booked the scan after Moorfields, in case I received bad news and needed something to look forward to. When the reminder came up on my phone last Sunday, excitement washed over my upset. I can’t deny I was slightly apprehensive about the 4D scan…
A week today and I will be at Moorfields and will find out how much my vision has changed in the last 18 months. The last 18 months have flown by and I really can’t believe how quickly it feels that this appointment has come around. My anxiety is still high about this appointment, nobody wants to hear they have lost vision, or their vision is progressing, it’s devastating and I’m just worrying if this is the case, then I…
I have thought long and hard about posting this blog post and then I thought that at the end of the day, I use this to get my thoughts and feelings down and my thoughts and feelings are valid. It’s not my intention to offend anyone, just to give my opinion. My Moorfields appointment is coming up soon and I can’t even express the anxiety and worry that this has created inside of me. I have been crying at the…
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…
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…
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…
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…
