A young woman has described how she deals with people in public staring at her due to her rare condition. 20-year-old Hannah Ross was born with Goldenhar syndrome and often pretends she is a celebrity to deal with staring.
Goldenhar syndrome is a rare congenital condition that affects the development of the eye, ear and spine. It meant growing up had its challenges, as numerous craniofacial operations, compounded by her scoliosis, saw her miss plenty of lessons during school.
Some teasing also took place although, on the whole, Hannah, who is from Potton, Bedfordshire and is a campaigner with the charity Changing Faces, says her school was inclusive and welcoming of difference. It was more her internal battle with confidence that brought about its difficulties.
Speaking exclusively to the Mirror, Hannah said: “In school, I was always shy anyway but I think a lot of it was to do with the way I looked because I was always worried people would judge or say something. Our school was quite a diverse school and it was good for people.
"Everyone was quite accepting but there were still the odd moments where people from other years who didn't really know me would stare quite a bit because they were curious. Sometimes, I just felt a bit uncomfortable, especially when I was on my own in school and if I wasn't with my friends at certain moments.”
She was also diagnosed with scoliosis, a curve of the spine, at the age of two, and has had titanium rods in her back since she was three. She also had her spine fused and permanent rods put in place once she turned 14.
Hannah, who is currently working at a nursery on an apprenticeship, has scarring on her back and a bump where the rod is, and her body is also a lot shorter. It meant that a lot of her early years were spent in and out of hospital and recovering from such operations would often be painful.
Hannah has been helped along the way by her supportive family, including her mum Ramona, 48, her dad Gavin, 50, twin sister Emma and younger brother Harry, 17. She is due to have another round of facial surgery this October and added: "It's to neaten up my eye, and I'm feeling a little bit nervous about it because it's going to change how I look again.
"Because I got used to how I look now and have developed more confidence, I don't know if after the surgery I won't like how I look even more than I did before." When Hannah was born, she had no eyelid on her right eye as some skin had grown in the wrong place and, after heading to Great Ormond Street Hospital, she had an eyelid put on to rectify it.
She also underwent surgery that saw some bone taken from her skull and put into the gap under the right eye to lift it slightly, and since then has had a number of other cosmetic surgeries. And one way in which Hannah has developed inner confidence over the years is to pretend she's a celebrity.
Having people staring at her as she walked down the street was difficult to cope with when she was younger, often leaving her feeling paranoid or on edge. "I was always really scared to go out in public by myself, and even with people I would worry," she said.
"I would worry because you never know what people might say, so when I was older I thought about myself as being some sort of celebrity. It helped me with feeling more confident and changing [the thought process to], 'They're staring at me because of something good rather than judging me'."
Her twin sister doesn't have a visible facial difference, so Hannah has had to bat away comments questioning how they could be twins, and she's also been placed in situations where she's been given a children's menu in restaurants during her late teens. "I sometimes talked to my friends about it a little bit but in school, when I was younger, I tended to hide how I felt," she added.
"I'm more confident than I was because I've created in my head an alter ego kind of thing. It's changing people's staring and their hurtful comments and turning it into something positive and caring less about what they think." A couple of years ago, Hannah hit another important personal milestone that she didn't think would be possible before - she went to university in Liverpool to study a combined course in dance and early childhood.
She remained there for over a year and while the experience ultimately wasn't her, it was another huge step forwards for her confidence. And one day, she hopes she will find a future partner and meet someone who sees past the differences and can see her for who she really is, just like her friends do.
"I managed to put myself fully out of my comfort zone because I was also tired of stopping myself from doing things I wanted to do because of the way I looked," she said. "I was really anxious about going out in public even if it was just going to the shop by myself, so going to uni was a proud moment for me.
"However, after the end of the first year I realised the course wasn’t really for me and I dropped out after the first semester of the second year. I think a lot of that was due to going during the pandemic, and I didn’t really know what to do after finishing A-Levels, so it meant it impacted my uni experience. I wasn’t able to meet many people for a long time and couldn’t go to many events which gave me that opportunity. This made it hard as I already struggled to make close connections to people due to the way I look affecting my confidence in socialising.
"I have a really good set of close friends who have been there for me and treat me completely normally, as well as my family." Seeing Hannah develop her confidence is a source of pride for her mum Ramona, who has often had to watch on as her daughter underwent risky surgeries or faced long spells of recovery.
"When Hannah was born, me and my husband didn't know what life was going to be like for her," she said. We did a hell of a lot of grieving right in the beginning. We said, 'What's going to happen? How is she going to be at school? How is she going to do this? Is she going to get married?'
"There wasn't as much information or support when she was born as there is now. It was difficult watching her go through surgeries. That was the hardest thing as we know the surgeries had to happen because they were there to try and improve things, but at the same time it's really hard to watch your child go through those regular surgeries.
"We're really proud of her and she's grown up to be a really nice person. There are still challenges ahead but she's done really well and dealt with everything quite well and in her stride."
Hannah has been supported by Changing Faces, the UK's leading charity for everyone with a scar, mark or condition on their face or body.
Nearly one in five people across the UK self-identify as having a visible difference such as a mark, scar or condition, and at least 1.3 million children, young people and adults in the UK are estimated to have significant disfigurements, including 569,000 with facial disfigurements. Her advice to anyone who may be finding life a bit tough is to speak to those close to them, and she also wants others to know the power that hurtful words and comments can have on individuals.
"If something's really affected them," she added, "definitely speak to someone about it, whether it be a friend or a family member, or just anyone they feel comfortable speaking to. When people say hurtful comments, they don't realise the impact it can have on someone."
Changing Faces launched a campaign called 'Stop the Stare' that highlights the impact of consciously or unconsciously staring.
Heather Blake, Chief Executive of Changing Faces, said: “We had hoped the shared experience of the Covid-19 pandemic might promote a more understanding society, but for those with a visible difference or disfigurement, there’s actually been a marked increase in being on the receiving end of stares, comments and abuse when they go out in public.
"With limited opportunities to socialise, people shielding, and visible differences being obscured by masks and face coverings, perhaps seeing a diverse range of faces and body types hasn’t been as commonplace in the past two years. But frankly that’s no excuse, it’s simply not acceptable that people are experiencing negative behaviours, abuse and discrimination because of how they look.”
Changing Faces is the UK’s leading charity for everyone who has a scar, mark or condition that makes them look different. For advice or support see www.changingfaces.org.uk or call 0300 012 0275.
