February is low vision awareness month. I thought this was a good opportunity to talk about my eye condition, Stargardts disease, that is taking away my precious eyesight.
Stargardts disease is an incurable, progressive, genetic juvenile eye condition, so I have this through no fault of my own. I had regular eye tests my whole life, but nothing was ever picked up until I was 31, even though I never had 20/20 vision. Stargardts disease is caused by a fault in my Abca4 gene that means I cannot process vitamin A properly like other people can and vitamin A is not good for my eyes at all. The vitamin A causes a build-up of something called lipofuscin on my macular inside my eye. The macular is used to see fine detail such as faces, reading and writing, watching TV etc. The macular is responsible for everything you see in your central vision and when that is damaged, life starts to get difficult. Stargardts affects both men and woman equally and both eyes, but is a very rare condition, with only 1 in 12000 people having it.
Stargardts causes low vision, often leading to legal blindness. Blindness does not always mean just seeing black. A person with Stargardts can be classed as legally blind, but still has some useful vision to help them get around and sometimes without having to use any visual aids.
When I think back to my teenage years. I think I have had blind spots for a long time, but because nothing was ever picked up at my opticians appointments or flagged up, I never thought anything of what I could or couldn’t see as I thought it was how everyone saw. In my 30’s I started to realise I couldn’t see well in low lighting and started to have lots of heavy flashing in my central vision and that’s when my new opticians found my macular damage and referred me to hospital.
I find there is such a lack of empathy surrounding vision loss. I personally think that because blindness isn’t something that makes you ill or is life limiting, people don’t understand the impact it has on your mental health and how devastating a diagnosis of incurable vision loss can be. I am in a constant state of anxiety about my vision loss progressing. Losing the ability to recognise my children and being able to drive and be independent really messes with your head some days and it’s certainly not an easy journey. Knowing you are going blind and there is nothing you can do about it is soul destroying and it is on my mind many minutes of the day, every single day of the week. I never get a break from it, because I can see all my blind spots and the constant flashing from the moment I wake up, to the moment I go to bed.
I have tried to create a picture of how I see. This is in certain lighting, especially dim lighting and when I have to adjust to a lighting change. As you can see, this is why I don’t always recognise my own child coming out of school. I can see clearer from the very centre as I have slight foveal sparing for now, which enables me to see through my very central. I hope this gives my followers some understanding of Stargardts disease and what someone goes through who is living with it ♥️.