Two years ago today I went by myself, to the opticians, for what I thought was just a 2-yearly check-up. 10 minutes into my appointment, and Stargardts had changed my life forever. 2 years on and although I have devastatingly already lost 2 lines of the eye chart in both eyes and there is deterioration on my scan pictures (although I am hoping with all I have that my eyes get slightly better once my baby is here) I am…
So tomorrow I will be 36 weeks pregnant. This pregnancy has really flown by and it’s scary to think I had Harvey at 38 weeks so may only have a couple of weeks left, eek! I have come out in a horrible cold the last couple of days and I’m struggling to sleep at night as much as I was because I can’t get comfy at this stage anymore. I have noticed a big change in my eyes the last…
May is health vision month. A lot of people who know me and my incurable eye disease may wonder why I bother to promote eye health and urge people to go to the opticians for regular check-ups. The reason I do this is because about 75 to 80% of eye problems picked up by opticians are either curable or manageable with the correct and prompt treatment. Wet Age-related macular degeneration can be held off with regular injections to prevent vision…
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…
