These stats above mean that my eye condition is rare, which is why I take up so much of my time talking about it. If you think I mention Stargardts too much, then great, my mission is working and people are listening. If nobody spoke about rare conditions, how would anyone ever find out about them? Just because Stargardts only affects a small amount of the population, it doesn’t mean it should be hidden away and people should just live with it without sharing the impact it has on our lives.
I often wonder if this is why some people around me just aren’t interested in what I have to say because it doesn’t affect them, or they feel it will never affect them. Stargardts probably never will, but I would like to point out that currently over 1.5 million people have AMD in the UK which is age related central vision loss. This is not rare and as we are living longer, our eyes are becoming more affected by these conditions. I never ever thought I would ever get diagnosed with progressive sight loss, but here we are, and I will continue to talk and raise awareness about Stargardts for as long as I possibly can. People need to know the impact that sight loss has on people so that more research and future treatments can be put in place. Rare shouldn’t mean we are ignored, but if we are, we just need to shout a little bit louder ♥️.