By Hannah Stevens @Hannahshewans
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Videographer / Director: Marcus Hessenberg
Producer: Hannah Stevens, Ruby Coote
Editor: James Thorne
From a very young age Emily Jones’ family knew that something was wrong, but it took doctors until she was 15 to give her an official diagnosis - Ehlers-Danlos Syndrome Type 3.
Emily said: “Ehlers-Danlos type 3 - or EDS Type 3 - is a connective tissue disease. So it affects collagen production in the body, and collagen is pretty much everywhere.
“It makes my muscles really weak, and affects my joints so they constantly dislocate all the time. It also affects skin, organs, like stomach, heart and intestines, for example.”
Throughout her childhood, Emily suffered from chronic joint pain with no clear diagnosis. Her mum, Julie, knew something was wrong almost straight away.
She said: “I knew something was not quite right from when she was born because she had an immature hip, which meant that the hip joint socket hadn’t formed properly. So when she started to walk, she struggled straight away.
“I did become quite concerned, because there’s so many variations with the condition. I didn’t know which way it was gonna go with Emily, whether she was going to possibly get better, or if she was going to get progressively worse.
“As we all know, Emily did get progressively worse. She is at the worst case scenario with the EDS Type 3. But you know what? She doesn’t moan about it.”
The 22-year-old underwent physiotherapy from the age of two to attempt to fix her legs, but nothing improved.
She said: “From about the age of about 11, so I was in high school, I couldn’t walk properly. I was on and off crutches and I was in and out of a wheelchair sometimes as well. I had to do a lot of work at home because I had to rest my legs.
“I became a bit stuck in here, so it made me a bit low. I became very depressed, didn’t really do much.
“It was difficult, I kept in touch with some of the friends I had but because I was really shy, I didn’t really have that many friends at that time.”
Eventually Emily’s doctors decided to put a feeding tube in as she was unable to keep any food down.
Now the London-based make-up artist is waiting for a permanent tube to be put in.
As a teenager, Emily often struggled to come out of her shell and feel confident, but in 2017 she met her boyfriend Jack through an online dating app.
Emily said: “Most people run miles away from it, as soon as they hear wheelchair or feeding tube they just instantly want to run, but Jack didn’t.
“He was more the opposite, he wanted to help me and he’s amazing really.”
Before meeting Emily, Jack had never even heard of EDS but he was determined to learn more.
Jack said: “I did watch a lot of medical things on TV but I’d never heard of EDS, or anything to do with it. Emily, from the get go, told me everything about it.
“She explained the condition, how it affects her life, what she has to do on a daily basis - the meds. She has the right attitude toward dealing with it, that positive mindset.”
While Emily had always harboured a love of make-up, she had yet to share her looks with the world, until Jack convinced her to share them online.
London-based Emily said: “He’s definitely helped me come out of my shell a lot because when I met him I was really shy.
“He’s kind of given me that nudge to do that beauty stuff, which I really wanted to do but I was too scared to and Jack’s helped me become confident enough to do it.
“Make-up makes me feel empowered and it makes me feel beautiful, even though I have the tube stuck to my face.”
Despite enduring some hate comments online, Emily is determined to keep going and to build her 44,000 strong Instagram following.
Emily said: “Being able to accessorise the feeding tube has changed my attitude towards it a little bit. It basically means now that I think it’s not really a hindrance.
“I can do whatever I like to it to make me feel more like me because I know all the make-up looks nice, so why not match the tube to all the make-up?”
Emily’s mum Julie has seen a huge transformation in Emily’s confidence since she began experimenting with make-up.
Julie said: “She’s opened right up, the make-up has given her so much confidence. All the time she’s presenting herself with these beautiful looks, it just really, really boosts her. It’s lovely to see.”
While Emily is eager to become a fully-fledged professional make-up artist, her main goal is to help others with feeding tubes feel beautiful.
She said: “My end goal for make-up would be to help those others with feeding tubes and make them realise that just because they have a feeding tube doesn’t mean that they can’t put on make-up, and doesn’t mean that they can’t feel beautiful.
“It’s alright to have a feeding tube.”