Picture description: A light pink background with the words 'The Big PICture' across it in a font that resembles handwriting. In the background are white letters saying 'TBP'. Just under 'The Big PICture' is a black image of two eyes looking up.
Happy eight month PIC anniversary to me!... Are vision loss anniversaries a thing? And do you say ‘happy’?! 😩🤣 I thought today, as it’s significant, would be a good opportunity to tell my story (the short version 😂)! Eight months ago I first noticed a big spot in the vision of my left eye that ‘flashed’ when I blinked. Over the next three months, I experienced streaking lights, a strobing spot, wavy lines, loss of colour perception and multiple blind spots in my vision that became so big, I could no longer read using my left eye. In those three months I was misdiagnosed three times and told there was nothing that could be done. Eventually, in January this year, I was diagnosed with Punctate Inner Choroidopathy (PIC) and started on my first course of steroids. Although I’m left with six large irreversible blind spots, the steroids stopped them growing even bigger and cleared up a central spot, meaning I am able to read again ☺️ After 3 months on medication, I came off and flared up again within days. I’m now back on high dose steroids, but topped up with a healthy wallop of long-term immunosuppressant medication, an ozurdex implant in the eye and a three month course of four-weekly eyelea injections.
It’s a lot but I’m very grateful that for now, my vision in my left eye is pretty good despite the PIC, and I’m hopeful my current treatments can stabilise things and protect my ‘good’ eye, which is going through a very, very early flare. I don’t know what the future may hold or how much vision loss I will experience, but in the meantime, I wanted to make this account to raise awareness of this rare disease, because I believe that if more people know about it (medical and non-medical persons), then diagnosis may be quicker and vision loss may be reversible, or at least maybe less severe. I’ll be sharing my day to day life with PIC on this account all in the hope that speaking up will help make a difference to someone else. Be this someone who already has PIC or vision loss from another disease, or someone who may lose vision in the future ✨
I look forward to sharing my journey with you!
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