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Wednesday 20th June 2018

What is Treacher Collins syndrome?

18th November 2010

Jono Lancaster explains about the challenges of living with Treacher Collins syndrome.

rescued livesQ

Jono Lancaster is 26 and has Treacher Collins syndrome, a genetic disorder that affected the way his facial bones developed while he was in his mother's womb.

He has no cheekbones, his eyes droop downwards and he has problems with his hearing and has had several operations.

Although Treacher Collins is a rare genetic condition that can affect anyone, it affects some one in 10,000 babies in the UK.

The chances of sufferers passing it on to children are thought to be about 50%. People with it often have problems with hearing, breathing and eating and many need specialised hearing aids or speech therapy.

Given up by his parents for adoption when he was only 36 hours old, he has come to terms with his looks but suffered depression as a teenager.

Lacking confidence and desperate to have friends he did what he describes as “stupid things” as deep down he became lonelier.

Life changed when he was offered a job in a bar and while it was tough, it gave him confidence, enough so to start dating, get a job in a gym and do a diploma in sports science at college and a fitness instructor course.

The job in the gym led to him meeting his long-term girlfriend, 20-year-old Laura Richardson.

He now works as a team leader with adults with autism but wants people to be more aware of what Treacher Collins is - and how to deal with it.


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Megan Strickland

Friday 19th November 2010 @ 2:26

I was really fascinated with how you are changing your life right now and hope it continues to improve the way you hope. I also have treacher collins; i was diagnosed with it when i was 3. And being a school student, i always have my good days and my bad days. And for me it is easy to get discouraged and to give up easily. But after reading your article it made me realize that i shouldn't make low expectations for myself and that i can reach my goals and that i can reach for my high expectations as well. And i really like your article! It makes me feel like I am not alone! :) :)


Friday 19th November 2010 @ 11:04

I really enjoyed the documentry last nite, my sister and my neice both have Treacher Collins and like yourself they are both amazing. My neice has it quite severley she has a tracheostomy, small bottom jaw, no cheekbones, under developed ears, cleft pallett and she just loves life and gets on with things. Id like to say I think your an amazing person with lots of drive and ambition and wish you every success and happiness for the furure.


Friday 19th November 2010 @ 11:52

I was interested to watch the programme as myself, my dad and my brother have TC. It was interesting to note the different attitude i have towards it as my parents encouraged me a lot. One criticism would be that the TC that much. I am lucky, my dad was chairman of the TC family Support group for years and have met many others with TC, young and adult. I would have liked more to have been said about it really and some of the effects. It didn't even deal with the fact that severity can vary, or the fact that the chance of having a TC baby increases for your second child.

I'm a teacher and have fought hard to come to this level. I work not far from where Jono grew up. The kids are asing me if I watched the programme but their understanding of TC hasn't improved (they are 11-16 yr old) so to me, it was pointless.

I also think the slant about how luck he was to have a g/f was sly. Of course he deserves it, who doesn't. It really seemed to me like they were saying 'Well done' for achieving it and also making out that no one in the world looks beyond facial features. My dad was married, my bro with TC has a non TC g/f and I have a non TC boyfriend (and I've had more than one long lasting relationship since I was 18).

I would be interested in meeting with Jono and talking through his experiences. There is a lot of support out there to help parents with the worst and what to expect, but no one every shows the good, which was a positive about the show.

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