Picture Description: Katie has edited a selfie of herself to show how she sees with Stargardt's disease. In her selfie she is wearing a long sleeved black top, and she has her long dark hair down. Her face is blurred and she patches of blue and yellow around her face too.
As part of National Eye Health Week, I will sharing stories from the friends I have made across the Instagram community. Many of these friends have different eye conditions to myself. I personally feel it is really important to help raise awareness of a variety of eye diseases, and not just PIC; vision loss of any sorts is devastating. Hopefully sharing these stories will raise awareness, potentially help others spot signs earlier, improve knowledge on caring for eye health, and importantly, help others feel less alone.
Stargardts disease is an incurable, progressive, genetic juvenile eye condition. 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.
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 hope this gives my followers some understanding of Stargardts disease and what someone goes through who is living with it ♥️
For the full story and to follow Katie's journey, please visit her blog and Instagram:
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