Alex – Cleft lip and palate

Alex was born with a unilateral cleft lip and palate and is currently studying for a degree in psychology. Alex has had ongoing treatment for her cleft palate including a bone graft operation. Alex enjoys fencing and enters competitive events, and she also plans to take a year out travelling.

Alex was born with a unilateral cleft lip and palate and is currently studying for a degree in psychology.

Alex was bullied by boys at her co-educational primary school so her parents moved her to an all-girls school where she joined her older sister. Alex was no longer bullied following her move to this school.

Alex had her lip repair as an infant and has had ongoing treatment for her cleft palate including a bone graft operation, and consequently Alex has taken time out of education for this treatment. Alex would often find herself explaining her absence from class to her friends and teachers, and this served to raise awareness amongst fellow pupils and teachers. Her experience as someone born with a cleft prompted Alex to research the psychological aspects of cleft for a school project. Alex also has an informal involvement in the Cleft Lip and Palate Association (CLAPA) youth council and draws on her personal experiences to help other young people affected by cleft issues.

Alex is awaiting further surgery to improve her jaw alignment which she will undergo before travelling after the completion of her degree.

Alex was born with a cleft lip and palate and experienced bullying when she was younger. Her experience has been more positive as an adult and has volunteered to work with the CLAPA Youth Council (CLAPA Edge).

Age at interview 19

Gender Female

Maybe you could summarise your experience of being born with a cleft lip and palate?

Yeah… so the first experiences I remember of it are being bullied because of it. But then I moved schools and… had more operations and so it started to improve. And then I started… to not really care about it anymore. And then through more treatment… I’m at where I am today, and it’s a positive experience now.

And what advice would you have for other young people who are born with a cleft lip or palate?

To not like let people get to them, to like not listen to the bullying and try and get it sorted as soon as possible. And then just be positive, because it makes them unique, and so it’s a good thing, not something to be ashamed about, so yeah.

OK thanks. And you mentioned earlier that you’ve been involved with CLAPA again recently, can you perhaps explain what’s brought you back into that, into that world, and what you’ve given to the organisation?

Yes well it’s just like we were waiting for a normal orthodontic appointment, and I saw a flier for the CLAPA football weekend, and then I went on that, and then I found out more information about the youth council, and then I went on that. And then I became too old for the youth council, so I am now a volunteer for CLAPA, so I helped out on residential weekends or part of the like… sorting out money, so wherever they need help really.

So some of it is practical help and some of it is more, would you say more emotional?

Yeah.

You know, do you have contact with other people with clefts and?

Yeah like theres loads of like different meetings, and you meet new people, and you hear their experiences, so it can help some people, yeah.

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Alex had undergone extensive cleft treatment as a child but she believes that health professionals use too many long words when talking to young people about their treatment.

Age at interview 19

Gender Female

OK do you have any advice for health professionals, is there anything you see wrong in the services you’ve had, anything you think could be improved?

Sometimes they definitely need to like talk to the children more that are like… I know the parents need to know but… they often like just don’t explain it well to children, so that will be one thing.

OK in what way do they not explain?

Or like they’ll use like too long words and like you’re an 8 year old kid: you wouldn’t know what they’re talking about then.

So too much medical jargon?

Yeah.

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