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I had a diagnosis for a rare eye disease called AZOOR and I’m supposed to have regular check ups at the hospital for this, but they’ve been a bit delayed due to the pandemic.

In September 2021, I went back to the eye hospital for a quick field test with a nurse and at the end of November, I attended again to have my routine scans done and to have a chat with my new consultant, as my usual consultant has now retired. My new consultant showed me my scans and my retina looks normal. When he put the scans side by side with the very first scans I had a couple of years ago, you could see the huge black patches in my retina seem to have gone away entirely.

That sounds good in theory.

However, I still can’t see out of my right eye properly, so this somehow did not feel like great news.

The consultant also seemed surprised to hear that I can’t see straight lines and that everything in my right eye looks wavy. He said the blind spots may be left over ‘damage’ from the disease taking hold a couple of years ago.

In February 2022, I returned to the hospital to see a different consultant for a second opinion, at my consultant’s request. I saw a uveitis doctor and she went through all of my scans from years ago until then with a senior consultant, who concluded two things.

My vision loss is permanent. The photoreceptors in my eyes are damaged, like scarring, and I will never regain the vision back. I can’t see straight lines as my brain is trying to fill in the gaps from the vision loss, so I will never see straight lines again.

I no longer meet the criteria for AZOOR and I now fall under the white dot syndrome spectrum, but I currently do not have a diagnosis. Unless I experience more changes in my vision, I will probably never have a clear diagnosis within this spectrum.

I felt better having a diagnosis, because I guess I was clinging onto the hope that, with AZOOR, I might have been able to retain the vision I lost. I’m left with a pretty rubbish right eye and no way to know if my vision loss will get worse. I’m told that it’s rare to reoccur, but also it was rare to happen in the first place, so the doctor said she couldn’t tell me whether it would happen again.

As always, I’m to monitor any changes in my vision and return in three months to the eye unit.

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The Vision Diaries