Video transcript:

Hi, my name is Amber. I’m 26 years old and I was born with a condition called OA/TOF. Growing up I was very independent with choking. My parents wanted me to be able to sort myself out. We’d get funny looks in restaurants as I’d go purple from choking and they’d be like, “She’s fine, she’s fine” and I would cough up into a tissue.

Sometimes I’d need a slap on the back but I got very used to sorting myself out. If I couldn’t get it myself then asking for help.

School, I always thought it was really cool because I got to I got to have a bottle of Coke in the staff room at school. So if it was really bad and I couldn’t get it out myself, then I’d have some coke and normally that would get it to go. Sometimes mum would have to be called and take me home and she’d give me a really hard whack on the back and it’d come straight up. So that was funny because it annoyed her. But otherwise growing up, I choked a fair bit. Everyone was on watch but other than that, I had Hospital trips.

I had a really lovely doctor called Dr Spicer and he was one who did the operation on me when I was first born. I had him up to when I got signed off so that was really lovely. I have fond memories of going to see him. When I was little I used to call him Dr Spicy so that was really cool. I got signed off when I was 16. I still carried on to have bouts of choking but they were a few and far between or they weren’t very bad.

When I was 21 I had my first stretch done because my oesophagus had closed. That in itself they said was quite strange, to have my first one at the age of 21. They said it’s normally something that would happen earlier on. But I like to be different. So I had that done when I was 21. That was the last time I was in hospital with it for an operation.

Then last year, I woke up with extreme chest pain. I had a temperature and couldn’t breathe properly. The pain was excruciating and an ambulance was phoned and I was taken into hospital.

And after multiple checks, a very long day in hospital, they came back with severe acid reflux. And that was shocking because the pain felt like what I expect to be the pain of a heart attack.

I do take a medicine to help with my acid reflux. That’s something I’ve taken since I was a baby. Just take it now in tablet form instead of the neon orange liquid that I used to have to take.

I still choke from time to time especially when I’m tired and that’s when as my mum would say, forget to chew. I still really struggle with meat. I’m okay with chicken and beef, a bit of brisket, but I don’t eat steaks. Really struggle with beef and pork, like pork steaks, just because I don’t think it’s a motion that I’m used to doing because I wasn’t brought up eating it, because I couldn’t do it properly. But that’s still something I really struggle with, chewing meat.

One thing I still find really interesting is going to the doctors and I’ll go in and I’ll say oh I’ve got this pain. Could this be linked to me being OA/TOF? And so many of them go “What’s OA/TOF?”

Still now it makes me cross because it’s in my notes. It says. But the amount of people that I speak and talk to that don’t know what OA/TOF is.

Sometimes I feel things could be because of OA/TOF. I do get quite a lot of chest pain and I get a lot of chest infections. Which is something they said when I was younger to my mum. If she gets coughs, that it will fall on her chest. So every year without doubt, I get severe chest infections, antibiotics, steroids, and I have an inhaler for the winter. Viral infections, again it will always be on my chest. I get really bad chesty coughs and that’s been the same since I was little.

My biggest achievement is that since I was five years old, on my first day of school, I said I wanted to be a teacher and I’m now in my fourth year of teaching. Which is the best job in the world. So really, growing up I had a few problems. I had a number of endoscopies. Trips to Bristol. Mum and dad always treated me with a Bratz doll as a bribe to go to have it done.

But apart from being signed off at 16, my stretch at 21, and my hospital visit last year, kind of everyday life you get on. Some days I get really bad acid reflux. Some days I don’t. But otherwise it’s business as usual. It doesn’t affect me massively day to day. Just if I’m tired I avoid meat.

It’s always fascinating when people look at my scar which has grown with me. It’s now about this big on my back. It’s a good talking point as well. Telling people what to do and about OA/TOF and raising awareness.

My mum said when I was born she didn’t get any help. It was very much, “Here’s your baby that’s been in an incubator, that we’ve fixed and mended . Don’t give her any solid foods and if you need any help ring us.” So she finds it fascinating that there’s now a group of people, a community that can talk, and raise concerns, and ask questions. Because she said she didn’t have any of that. It’s really nice to see people’s stories and to ask people ask questions.

I’ve read a number of things that adults have posted and I’m like, oh I have that or I’ve experienced that. So it’s that peace of mind that you’re not on your own because I don’t know any other TOFs. Never come into contact with any other people with TOF. It’s nice to have that community of people that you can share your story, hear their stories and just know people that are like you.

So, being a TOF isn’t all bad.  It’s actually quite good and I’ve got a lovely neat scar on my back to prove it.