Rare Conditions Common Problems

Despite the term, around three million people in the UK are afflicted by some form of rare disease. With symptoms often hidden from view, sufferers can be left feeling isolated with a lack of support. Jamie Broadway, who himself suffers from a rare visual defect, shines a light on the daily challenges faced by those living with rare diseases and explains why exercise isn’t always the magic cure

It all started with a slight shimmer in the corner of my left eye: a sensation so strange that it was difficult to even describe it to the optometrist. They thought I was making it up. After all, everything looked fine. Even the local hospital disregarded it. “There’s nothing wrong with you, it’s a visual migraine,” I was told repeatedly. But it wasn’t.

A year and a half later, following the complete loss of my peripheral vision, a misdiagnosis, an MRI scan and ocular electrophysiological testing, I was eventually diagnosed with AZOOR (Acute Zonal Occult Outer Retinopathy) in my left eye: a rare retinal inflammation that causes the sufferer to see constant flashing lights. It gradually robs the retina of its ability to send messages back to the brain, but on the surface there doesn’t seem to be any issues; the retina looks healthy and functional – hence the word ‘Occult’ in AZOOR.

The initial prognosis sounded positive. One consultant claimed it was a condition which eventually stabilises after a few years. However, in 2015, eight years after the initial symptoms and several doctors later, the condition intensified. It started depriving me of visual acuity and bulldozed my mental health.

By 2016, I was having sleepless nights and spending whole days obsessing over my eye. The constant flashing lights, whether my eyes were open or closed, meant that it was all I could think of and see – with no escape. Such a small piece of human tissue like the retina was now having a gargantuan toll on my emotional wellbeing.

DAILY STRUGGLE