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Nystagmus Awareness Day: Matt explains his condition

Full facial shot of Matt Bagot wearing a black and white Chorley FC football shirt
Matt Bagot

When people notice Matt Bagot’s eyes moving quickly from side to side, they think he is drunk.

But the 50-year-old has nystagmus, where the eyes make repetitive, uncontrolled movements. It is a condition Matt has had since birth, yet he admits not that many people know of its existence and ask what is wrong with his eyes.

So as part of Nystagmus Awareness Day on June 20, he wants to share his story to help more people understand the condition.

He says: “When I was a few months old, doctor told my parents I had infantile nystagmus. I also had cataracts, which I assume I had from birth.

“I didn’t really think about it, as I just got on with it. I went to a primary school in Euxton for one term, but I was struggling to see the blackboard, so I went to the Derby School for the Partially Sighted in Fulwood. For me, it was just like going to a normal school, where the teachers helped me with visual aids.

“I don’t see my eye pattern moving, but people notice it and ask why my eyes are going from side to side. They think I am drunk, as not a lot of people have heard of nystagmus.”

Matt, who lives across the road from his parents in Euxton, says his vision has never held him back, as he found work at Lancashire Fire and Rescue Service (LFRS) as a gardener and handyman.

But he admits his eyesight has deteriorated in recent years, meaning he had to retire earlier this year under the grounds of ill health.

Matt Bagot is sat on a chair in a back yard with lots of greenery and hanging plants
Matt Bagot

He says: “I had worked for LFRS for 28 years as a gardener and handyman. I have been quite lucky as I have been able to lead a normal life up until recently.

“But my eyesight has deteriorated now. In my left eye everything is hazy because the blood vessels are dispersed in my eye, so I have to take blood serum drops to clear my vision.

“If I close my left eye, my sight is clear, but for some reason I seem to look out of my left eye to see things.

“But as my eye sight is getting worse, it is making me do things I would not have done before, like tripping over things, so I am more conscious of that.

“My cataracts cannot be treated with a laser as it would be normally because of the rapid eye movement, which affects the nerves at the back of my eye.”

Matt has happily retained his independence and has been supporting sight loss charity Galloway’s for several years. He took part in its annual Morecambe Bay Walk in 2018, to raise funds.

He said: “I have done quite a lot of charity work over the years. I received a lot of help from Derby School when I was a child and so I want to give something back to the blind and partially sighted community. There are many people with severe sight problems and it is good to know that Galloway’s is always there for people when they need support.

“Now I am retired, after lockdown, I would be interested in taking part in the social activities and becoming more involved.”

Fact File – provided by RNIB

Nystagmus is a condition which causes constant movement of the eyes and can’t be controlled.

This can be in a side to side, an up and down, or a circular motion, or a combination of these. This uncontrolled movement can affect how clearly a person can see. Most people with nystagmus have reduced vision.

Nystagmus is caused by a problem with the way the eye sends messages back to the brain or how parts of the brain which deal with eye movement make sense of the information.

There are two main types of nystagmus: one which appears in the first few months of life called infantile or congenital nystagmus; and another which develops later in life which is usually called acquired nystagmus.

Infantile nystagmus can be caused either by a problem with the eyes themselves or by a problem with the parts of the brain which control eye movements. But sometimes children develop nystagmus without these problems.

If a baby is born with an eye condition which affects how well they can see, then their visual system may not have a chance to develop normally and this can lead to nystagmus.

Some eye conditions which can cause reduced vision in children include:

• congenital cataracts

• ocular albinism

• retinal dystrophies, such as cone dystrophy or congenital stationary night blindness

• optic nerve conditions, such as optic nerve coloboma or hypoplasia

• aniridia.

However, in many children the nystagmus can happen for no known reason and a cause can’t be found – this is called idiopathic infantile nystagmus.

Nystagmus that develops later, in adults, is called acquired nystagmus. Anything that damages the parts of the brain that control eye movements can result in acquired nystagmus.

Acquired nystagmus is usually a sign of another underlying condition such as stroke, multiple sclerosis, brain tumour, head injury or the effects of a drug.

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