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The Camerons: "It’s something we have, and we accept."

At school, a teacher asked Beth Cameron if she was worried she would not realise her ambitions for a career in education because of her eye condition. 

Beth, now a first-year maths student at Durham University with plans to become a math teacher after graduating, answered with a typically pragmatic response. “I said, ‘well yes, but my sight’s going to affect anything I do, so I might as well do the thing I want to and figure out the adaptations. That’s better than doing something that might seem easier, but which I’d still need adaptations for.’”

The fact that Beth, 18, and sibling, Ed, 20, have autosomal dominant optic atrophy (ADOA), does not stand in the way of their goals. 

Ed, a second-year sport coaching student at Solent University in Southampton, has aspirations as firm as his sister’s. After university, he plans to combine travelling with private coaching before a career in sports performance analysis and biomechanics.

Headshot of Kate Cameron standing in the garden

"My sight’s going to affect anything I do, so I might as well do the thing I want to and figure out the adaptations. That’s better than doing something that might seem easier, but which I’d still need adaptations for.”

Beth Cameron
Cameron Family Fund

A rare genetic condition won’t hold siblings back

ADOA, a genetic condition inherited by the siblings from father, Daniel, means Beth has 20% vision and her brother 66%. There are no approved treatments or cures for ADOA, caused by a faulty gene, which affects optic nerve function. It causes progressive, irreversible sight loss in both eyes and there is a 50% chance of inheriting this from a parent. An estimated one in 25,000 people in the UK are affected by the rare condition.

Ed adds: “My eyes work fine, but it’s the process of that vision being transported to the brain through the optic nerve that’s not quite right - it gets lost in translation. In my case, about a third gets lost.” 

He adds that people may assume he and his sister have an innate and mutual understanding of ADOA’s impact, but the condition affects people differently: “I don’t know how Beth sees, she doesn’t know how I see - and neither of us know how we were supposed to see. It’s something we have, and we accept.” 

Beth agrees: “I’ve got nothing to compare my sight to, so I don’t know what I should be seeing, only what I can - and can’t - see. We don’t talk about it much in depth, apart from practical stuff like ‘can you see that?’”

Growing up, Ed says he has memories of being at primary school in Kent and not being able to see from the back of the class and adds it was far more obvious going into secondary school, “like not being able to read the train sign on the journey in”.

Beth vaguely recalls being unable to see house numbers but her most vivid memories are of being at primary school and having to explain what she could and could not see to fellow pupils. “I remember people asking, ‘can you see me’ or ‘how many fingers am I holding up?’”

Raising awareness of their condition

At school, to raise awareness among her peers, Beth did a talk on ADOA for Jeans for Genes Day, the annual fundraiser which encourages people to wear jeans at work or school and raise money for those affected by genetic conditions. “I spoke about it coming from my dad, who has it from his parents, and about how it affects me.”

The siblings are practical about the help they need to do the things they want. “With me it comes up very quickly,” says Beth, whose sight is affected more significantly than her brother’s. “I can’t be bothered anymore to try and get on with things without adjustments. I feel if everyone knows, and knows what I need to see, it’s better.’ 

Beth, who had visual aids like magnifies when younger, now reads texts or screens in larger font. University staff also supply her with a full set of notes before lectures, and she sits at the front in the lecture hall. One of Beth’s flatmates is a fellow math student, “so he checks I can see things”.

Ed adjusts how he plays sport: “When I play tennis, I play from further behind the baseline than everyone else because I need more time to recognise where the ball is.”

One common issue, which the siblings are more amused than frustrated by, is when people share and show each other content on their phone screens. Ed says: “Someone will show something from across the room and smile and wave it on - it’s not worth the effort every time!” 
 
Both, however, are aware of how their eyesight is affected by light. Keen sportsman Ed explains: “I struggle with floodlit courts or pitches - sport is something I can do most of the time, but it doesn’t work for me when its dark and the environment’s artificially lit. It’d be easier to play in the dark without lights, because of how floodlights cut up the court. You have all these beams coming at you from all around you and the ball just disappears. In the dark, it’s hard to see but it’s consistent.” He wears sunglasses when playing on a floodlit court or pitch.

Beth, agrees. She has postponed playing volleyball at university until the evenings become brighter and adds of playing team sports with transient participants: “I’ve got to weigh up if it’s worth me looking like I’m terrible at sport, because no one knows why, or me taking time to tell new people every week.”

“I don’t know how Beth sees, she doesn’t know how I see - and neither of us know how we were supposed to see. It’s something we have, and we accept.”

Ed Cameron

Supporting research into sight loss

Along with mother Kate and twin 16-year-old siblings Hannah and Amy, the family raises awareness and money for ADOA research through the Cameron Family Fund.

Greater understanding, says Ed, would be welcome: “Because so few people have it, it’s less known, which is the case with any rare condition. We’ve got to hope that people discover it and take an interest.”

As for others with the same, or a similar condition, says Beth, the crucial step, is to reach out for support: “You may not know what you need but there’ll always be someone who does, and who knows how you navigate it. There’s a lot of trial and error in finding out what works, and a lot of practice and practising asking for things - but we’ve gotten good at it.”

This pragmatism, adds Beth, comes from “pure frustration”: “I realise that if I don’t tell people what adjustments I need, I just don’t get things that help me see. And I don’t even use ‘partially sighted’ as a term much, I’m more likely just to explain that I can’t see things.”

As Ed reflects of this approach: “It’s a process of working out what you need to be able to live as close to ‘normal’ as everyone else. It’s just about what makes life easier.” 

“If I can do anything in my lifetime to help prevent my children from losing any more sight, or to give them the opportunity to give them better sight, then that’s what I’ll do.”
Kate Cameron, Cameron Family Fund
More on Family Funds
Headshot of Kate Cameron smiling

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