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Stargardts Awareness Vision Loss

Vision

Will glasses help?

January 19, 2021
I am standing holding a board that reads “No glasses won’t correct my vision, I’m going blind!” I have my hair in plaits and a black jumper on.

This is something that I get asked a lot. “Can glasses help with your eyesight?” The short answer to this is no. My eye condition (stargardts) is a genetic disease that causes a build up of something called lipofuscin on my macular. This is simply because, unlike the rest of the population, vitamin A which is good for the eyes, is actually toxic to mine. It is this that causes the damage to my retina (see picture below). 

the inside of my eye showing the damage.
The inside of my eye showing the damage.

Glasses help correct people’s eyesight by allowing eyes to focus light on the right spot of the retina. This cannot happen in parts of the retina that are damaged and vision is being or has been lost as no light can pass through. 

With my eye condition, it is central vision loss, so I still have clear and useful peripheral (side vision). Some people choose to wear glasses to aid their peripheral vision only, but this will not correct any of the central vision. As time goes by and the central vision declines, glasses for the peripheral vision man also stop being useful. 

a close up of the board which reads “No glasses won’t correct my vision, I’m going blind!”
A close up of the board which reads “No glasses won’t correct my vision, I’m going blind!”

As you can see in my picture, I have glasses on with an orange lens. These (other than sunglasses) are the only glasses I use regularly, but they aren’t for correction, they are blue light blockers and have full UV protection for when I am using a screen, or lights are too bright for me and on cloudy days where sunglasses are too dark. 

I hope this helps people underhand a little bit more about sight loss and blindness and why we cannot just fix this with a simple pair of glasses. 

Vision

Two Years Today

June 13, 2019

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 continuing to try and stay as positive as I can, but it’s not always easy. You can never get away from vision loss, you look through it all of the time and it is with you every waking minute of the day to remind you of what you have lost and what you are still to lose. Your eyes constantly have to adjust from one light setting to another, from one season to the next, no eye day is the same and this can be frustrating. 

Opticians Camera Work
Opticians Camera Work

People always say to me how well I have done to carry on, but there was no other option, this isn’t a fixable situation, so I just have the make the best of what I still have.

In 2 years I have had so much support from my close family and friends and also from the network I created for myself online to help me cope and I am extremely grateful to every one of those people who help lift me up when I feel down and help me to feel less alone with something so rare. There are also others who have just disregarded my Stargardts like it’s a twisted ankle and make me feel like I should just ‘get over it’, without any thought to how they may feel or cope being in my situation. People forget its progressive and realistically, by the time I am pushing 50, I probably won’t have much, if any central vision left and of course that could be even earlier as nobody knows the progression (unless a cure is found in that time 🤞🏼). Regardless of the latter, I am proud of how far I have come in the 2 years since my Stargardts was discovered and I am adamant I won’t let it stop me enjoying my life. I can’t deny that if I overthink my situation some days, fear grips me tightly and I will be honest and say I do get scared for my future and what I will miss, but none of us know what is around the corner and where we will be in ten year’s time, let alone tomorrow, so that’s why I try so hard to live for the now and for the moment, however big or small those moments might be and that is where Stargardts has changed my life for the better as I never did this before. If Stargardts has taught me anything, it’s that’s life is fragile, and things can change in a second and we should spend more time enjoying the small things and trying to let go of the things we can’t change and accepting them for what they are. 

Life Quote
Life Quote: “And yet, I suppose you mourn the loss or the death of what you thought your life was, even if you find your life is better after. You mourn the future that you thought you’d planned.” Lynn Redgrave.

I never dreamed this would be my future and if I could change it I would in a heartbeat, but I can’t, so I can’t waste all my time dwelling on it. My biggest regret is letting anxiety take my twenties and manipulate what I could and couldn’t enjoy and after finally overcoming it and feeling so much better, A few months later I then got told I had Stargardts, but I don’t want that to take my 30’s and the rest of my life because this one isn’t fixable and life is too precious to waste on something I can’t control. There will be times where sadness consumes me with every time my eyes deteriorate, but I will get through it with the help of everyone around me and hopefully each year that passes, this day will become easier and more of a distant memory ♥️.

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