After being told she had an autoimmune disorder, Jade’s eye started giving her bother…
Gazing in the mirror, I noticed something odd.
What’s that? I thought, leaning in.
It looked like a small blister inside the white of my right eye.
A few months earlier, I’d been diagnosed with Graves’ disease, an autoimmune disorder that caused an overactive thyroid gland.
I was on antithyroid medication to help, and wondered if my eye nuisance was linked to that.
My optician gave me lubricating eye drops but as time went on, the blister became even more painful.
Every time I moved my eye or blinked, I winced.
I went to another opticians, who suggested I go to A&E.
When a specialist assessed me, he diagnosed me with thyroid eye disease (TED).
‘What’s that?’ I asked.
‘It’s an inflammatory disorder that affects the tissues around your eyes, causing swelling and discomfort,’ he explained.
I was shocked. I’d thought I had a simple eye infection.
My endocrinologist hadn’t mentioned it could happen, but
it was closely linked to Graves’ disease. In fact, I learnt about 40% of people with the condition developed TED.
Researching further, I was terrified to discover it could lead to blindness if left untreated.
I set about trying to find an eye doctor who was also an ocuplastic surgeon and able
to help me.
Finally, I found one.
‘Unfortunately your TED has progressed too far for medication, so we need to keep an eye on it and see how it progresses over time,’ she said.
She added that TED was a self-limiting disease,
that could take anywhere from
18 months to two years to run its course.
When it was stable, doctors would assess the damage and repair
it, which could take anywhere from several months to years.
Unsure if I would end up losing my sight, I fell into a state of uncertainty and depression.
I had to use eye drops every couple of hours, and I taped my eye shut at night with a lubricant eye gel.
Four weeks after my diagnosis, I began waking
up with double vision every morning. I struggled to read and I couldn’t drive any more, so I had to rely on friends and family to get around.
Then I developed drug- induced rheumatoid arthritis
in my hands and feet due to the thyroid medication.
Over time, my right eye started to protrude too.
I wore mountaineering goggles whenever I went out, as I couldn’t stand the stares and it helped me cope with bright lights.
One day when I was at
the GP surgery picking up a prescription, I lifted up my sunglasses to see what I
was signing.
‘Do you know your eye is sticking out of your head?’ a stranger said.
I was so taken aback.
Why point it out? I thought.
Eventually, doctors decided that it was best to remove
my thyroid, as it could sometimes improve TED symptoms.
The surgery itself went
well, but hopes of it fixing the problem quickly faded when my symptoms worsened,
and my depth perception
went totally off.
The medication I was given after surgery also gave me an awful rash all over my body.
A few months later, I underwent a second
operation to repair my right eye, followed by surgery to
fix the damage to my eyelid muscles.
It’s been incredibly difficult to manage, and the psychological impact has been harder to deal with than the physical.
Later this year, I need to undergo a third eye surgery to further repair my eyelid.
That’s why I’m going wing-walking to raise money and awareness of TED.
I still have a long way to
go, but I’m determined to
help others.
By Jade O'Saye, 41, Newport, Shropshire