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| Cleidocranial dysplasia: The mum and son with a one-in-a-million condition | Cleidocranial dysplasia: The mum and son with a one-in-a-million condition |
| (8 months later) | |
| Karen and Jaiden have CCD, which affects their bones and teeth | Karen and Jaiden have CCD, which affects their bones and teeth |
| Karen and Jaiden have CCD, which affects their bones and teeth | |
| "I don't have collarbones, so I can touch my shoulders together under my chin," says Karen Hunt. | "I don't have collarbones, so I can touch my shoulders together under my chin," says Karen Hunt. |
| "It's a party trick. There have to be some perks to my condition." | "It's a party trick. There have to be some perks to my condition." |
| Karen, 40, and her four-year-old son Jaiden have cleidocranial dysplasia (CCD), a rare genetic condition that can affect teeth and bones. | Karen, 40, and her four-year-old son Jaiden have cleidocranial dysplasia (CCD), a rare genetic condition that can affect teeth and bones. |
| People with CCD might have bones that form differently or are more fragile than normal, and certain ones like collarbones may be absent altogether. | People with CCD might have bones that form differently or are more fragile than normal, and certain ones like collarbones may be absent altogether. |
| After decades of obscurity, CCD is now gaining more public recognition, thanks to the Stranger Things star, Gaten Matarazzo, who has the condition. | After decades of obscurity, CCD is now gaining more public recognition, thanks to the Stranger Things star, Gaten Matarazzo, who has the condition. |
| It can be passed from a parent to a child, or can appear at random. | It can be passed from a parent to a child, or can appear at random. |
| Karen Hunt says she was bullied at school | Karen Hunt says she was bullied at school |
| Karen Hunt says she was bullied at school | |
| In Karen's case, her baby teeth were removed because they would not fall out naturally. | In Karen's case, her baby teeth were removed because they would not fall out naturally. |
| Her second teeth then struggled to come through and further surgery was needed to make that happen. | Her second teeth then struggled to come through and further surgery was needed to make that happen. |
| The condition can cause people to look different, and Karen says she was bullied at secondary school because of this. | The condition can cause people to look different, and Karen says she was bullied at secondary school because of this. |
| "It was awful," she said. | "It was awful," she said. |
| "People would ask 'what's wrong with your face? Why don't you have any teeth?' | "People would ask 'what's wrong with your face? Why don't you have any teeth?' |
| "As an adult, I can answer those questions, and I want people to ask them. Knowledge is key to understanding difference," she added. | "As an adult, I can answer those questions, and I want people to ask them. Knowledge is key to understanding difference," she added. |
| "That's what I want for my son. I want him to see me be confident about it and to embrace our unique look." | "That's what I want for my son. I want him to see me be confident about it and to embrace our unique look." |
| Karen is hopeful her son Jaiden will have a better experience of CCD | Karen is hopeful her son Jaiden will have a better experience of CCD |
| Karen is hopeful her son Jaiden will have a better experience of CCD | |
| Orthodontic surgery to bring her adult teeth through was so painful, Karen says, that she stopped midway, and now has gaps in her top teeth. | Orthodontic surgery to bring her adult teeth through was so painful, Karen says, that she stopped midway, and now has gaps in her top teeth. |
| "I remember saying to the orthodontist, will I still look different if I have the work done? | "I remember saying to the orthodontist, will I still look different if I have the work done? |
| "He told me I would, so I felt at the time it wasn't worth going through the pain." | "He told me I would, so I felt at the time it wasn't worth going through the pain." |
| For her son Jaiden, CCD has had an even more serious effect. The enamel on his teeth is very thin, and all but four of his baby teeth have worn away or have had to be removed. | For her son Jaiden, CCD has had an even more serious effect. The enamel on his teeth is very thin, and all but four of his baby teeth have worn away or have had to be removed. |
| But Karen is hopeful that Jaiden's experience of life with the condition will be better than her own. | But Karen is hopeful that Jaiden's experience of life with the condition will be better than her own. |
| "I didn't have anyone to reach out to and I didn't know anyone else with the condition. | "I didn't have anyone to reach out to and I didn't know anyone else with the condition. |
| "My son has me, and I have experienced most of what he'll go through. | "My son has me, and I have experienced most of what he'll go through. |
| "We have this incredible nationwide network of people with CCD in the UK and we all support each other. | "We have this incredible nationwide network of people with CCD in the UK and we all support each other. |
| "The procedures Jaiden will have to go through are different these days, and hopefully he'll end up with a good set of teeth at the end of it." | "The procedures Jaiden will have to go through are different these days, and hopefully he'll end up with a good set of teeth at the end of it." |
| The actor Gaten Matarazzo has CCD and has worked to raise the profile of the condition | The actor Gaten Matarazzo has CCD and has worked to raise the profile of the condition |
| The actor Gaten Matarazzo has CCD and has worked to raise the profile of the condition | |
| Around one in a million people has CCD, meaning it has received little attention historically. This is now starting to change. | Around one in a million people has CCD, meaning it has received little attention historically. This is now starting to change. |
| Gaten Matarazzo, who stars as Dustin in the Netflix series Stranger Things, has been vocal in raising the profile of the condition. | Gaten Matarazzo, who stars as Dustin in the Netflix series Stranger Things, has been vocal in raising the profile of the condition. |
| He sent a message to a recent conference in the UK for people with CCD. | He sent a message to a recent conference in the UK for people with CCD. |
| "Loving yourself isn't showing the parts of yourself you're confident in. It's showing off the parts of yourself that you're least confident in, in spite of your fear." | "Loving yourself isn't showing the parts of yourself you're confident in. It's showing off the parts of yourself that you're least confident in, in spite of your fear." |
| That is how Karen views it, too. | That is how Karen views it, too. |
| She teaches her son to be happy and confident. | She teaches her son to be happy and confident. |
| "He just gets on with it," she said. | "He just gets on with it," she said. |
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| Related Topics | Related Topics |
| Health | Health |
| Bristol | Bristol |
| Stranger Things | Stranger Things |