Support groups for disfigurement

There are lots of groups that can offer support, information and advice on specific conditions that can cause disfigurement. Below are some examples, but the list is by no means exhaustive.

Acoustic neuroma support

British Acoustic Neuroma Association (BANA)
BANA offers mutual support and information to people affected by acoustic neuroma.

Alopecia support

Alopecia UK
Alopecia UK provides information, advice and support for people with alopecia areata, alopecia totalis and alopecia universalis.

Bell's palsy support

Bell's Palsy Association
The only UK-registered charity dedicated solely to providing help and information to people with Bell's palsy.

Facial Palsy UK
Charity supporting people who are affected by facial paralysis.

Birthmark support

The Birthmark Support Group
A UK-based support group for anyone with a birthmark.

Body dysmorphic disorder support

The BDD Foundation
The foundation aims to increase awareness and understanding of body dysmorphia, and also helps people to overcome the disorder.

Anxiety UK
The largest charity dealing with anxiety disorders.

Burns support

The Children's Burns Trust
The Children's Burns Trust is committed to providing support for burn- and scald-injured children and their families.

Cancer support

Macmillan
Expert information about all types of cancer, with cancer information specialist nurses who can answer questions by phone or email.

Cleft lip and palate support

Cleft Lip & Palate Association (CLAPA)
CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate.

Craniofacial conditions support

Headlines
Support for those affected by craniosynostosis and associated conditions.

The Craniofacial Society
A society for the study of cleft lip and palate and other craniofacial anomalies.

Disfigurement support

Changing Faces
Support for people who have disfigurements of the face or body from any cause.

Eczema support

National Eczema Society
A patient support organisation offering help and information to everyone affected by eczema.

Eczema Voice discussion board
A site where people with eczema and their carers can share experiences and read other people's stories.

Epidermolysis bullosa support

DEBRA
A UK charity for people with the genetic skin blistering condition epidermolysis bullosa (EB).

Goldenhar syndrome support

Goldenhar Family Support Group (UK)
Support for families of people with Goldenhar syndrome and related problems.

Ichthyosis support

Ichthyosis Support Group
A network of parents, medics and people with or affected by ichthyosis.

Limb loss support

Limbless Association
Information, advice and support for people without one or more limbs.

Neurofibromatosis support

The Neuro Foundation
Help, support and advice for those affected by either form of neurofibromatosis and their families.

Pituitary disorders support

The Pituitary Foundation
Support and information for pituitary patients, their families, friends and carers. Campaigns to increase public awareness of pituitary disorders.

Post-traumatic stress disorder support

The United Kingdom Psychological Trauma Society (UKPTS)
Information for the general public and health professionals about post-traumatic stress.

Proteus syndrome support

Proteus Family Network
A UK support group for families and individuals affected by Proteus syndrome.

Psoriasis support

Psoriasis Association
Help for people with the chronic skin disease psoriasis.

Retinoblastoma support

Childhood Eye Cancer Trust (CHECT)
A UK-wide charity for families and individuals affected by retinoblastoma.

Scarring support

The Scar Information Service
Providing information on scarring, scar therapies and support organisations.

Stickler syndrome support

Stickler Syndrome Support Group
Information for families, healthcare and medical professionals affected by, or caring for, people with Stickler syndrome.

Sturge-Weber syndrome support

Sturge-Weber Foundation
Support and information on different aspects of Sturge-Weber syndrome, a rare neurological disorder.

Treacher Collins syndrome support

Treacher Collins Family Support Group
Support, advice and friendship for people with Treacher Collins syndrome and their families.

Vitiligo support

The Vitiligo Society
Support for people with vitiligo and their families in the UK and the Republic of Ireland.

Xeroderma pigmentosum (XP) support

XP Support Group
Support for people with XP and other related conditions, and their families.

Treating birthmarks

In the case of most birthmarks, such as port wine stains and haemangiomas, early medical attention will help reduce the chance of health complications.

Watch a video on treating birthmarks

If you notice that your newborn baby has a birthmark, or you feel there's something unusual about their appearance, raise it with your obstetrician, midwife, paediatrician or health visitor.

If necessary, your baby may be referred by the hospital team to the appropriate consultant (so you won't need to go through your GP).

If the disfigurement doesn’t require immediate medical attention, you will be advised to contact your GP.

“Parents can ask their doctor to refer them to a birthmark specialist or a paediatrician with a special interest in disfigurement,” says Dr Samira Batul Syed, a paediatric consultant at London’s Great Ormond Street Hospital.

Port wine stains

“If the baby has a port wine stain, I will determine if it’s purely cosmetic or if there are any complications resulting from the birthmark,” says Dr Syed.

“The treatment of choice for port wine stains is pulsed dye laser therapy. It won’t remove it completely, but can improve its appearance by up to 70% after four to six treatments.”

If the port wine stain is on the face and covering the eye or scalp, there is a risk of glaucoma or epilepsy. “In this instance, early intervention is necessary,” says Dr Syed.

At the hospital, the consultant can call on a number of specialists qualified to deal with birthmark complications, including ophthalmologists, neurologists and surgeons.

“If there’s a birthmark around the mouth, I need to think about feeding problems or breathing difficulties,” says Dr Syed. “In this case, I would involve the feeding team or the ENT (ear, nose and throat) specialist.”

Haemangiomas

Haemangiomas are birthmarks caused by tiny blood vessels that produce a raised mark on the skin. About 80% of haemangiomas don’t cause problems, and will recede and eventually disappear with time.

However, in 20% of cases, where the haemangioma is growing near the eye, nose, or mouth, treatment should start within the baby’s first four weeks to prevent further growth.

“We must always be aware of associated complications and deal with them appropriately,” says Dr Syed.

The psychological impact of facial disfigurement is usually observed in children from about the age of five, and sometimes earlier. “This is especially true if the parents have expectations about how their child should look,” says Dr Syed.

Parents and children can get help from disfigurement support groups such as the Birthmark Support Group or Changing Faces.

“For long-term conditions, it’s important to get support to help the child deal with different forms of discrimination they may encounter,” says Dr Syed.

Help your child to cope with their disfigurement

In public, your child may feel self-conscious about their condition. Knowing how to handle tricky social situations with confidence will benefit both you and them.

You may be anxious about your child’s future – starting school, for example – and worry about their health and medical treatment options. These concerns are common, but can be overwhelming.

Being better informed about your child’s condition will help you cope with it. Talk to their consultant and don’t be afraid to ask as many questions as you need to.

There are also easy-to-learn, practical skills to help parents overcome some of the common challenges and uncertainties they may face. Your child will learn from watching you deal with challenging situations.

Talking about your child's condition

Think about the best way to describe your child’s appearance. That way, you'll be ready when strangers ask unexpected questions. Provide a brief explanation, reassure the person asking the question that your child is fine, and move them on to another subject.

“That way you explain, reassure and then distract the person,” says Helen Smith of the charity Changing Faces, which supports people who have facial disfigurements and their families.

To a question like, “Why is her face like that?” a parent can say, “Sarah’s lip was broken and the doctors have fixed it. We’re off to the park. Where are you going?”

Your child will feel more confident if they see you respond to other people's questions confidently.

“Children learn by watching other people,” says Helen. “If they see their parents positively managing other people’s reactions, they will learn to do it themselves. They will also have a language to use.”

Stares and comments

“If someone is staring, it can be helpful to make eye contact and smile,” says Helen. “That is often enough to break someone’s stare.

"You can then choose to continue what you were doing or start a conversation. Parents sometimes see this as a positive way to help people move beyond their focus on their child’s disfigurement, and learn more about their child.”

You don’t have to listen to comments that are offensive – and if you feel like saying something, you can. Short responses are usually best. Try to keep calm, even if you don’t feel it.

Here are some ideas:

• "Please don't stare, my child has a scar on his face."
• "My daughter has a birthmark. You can't catch it."
• "Please don't stare. It makes us very uncomfortable."

Talk to your child and try to move your thoughts away from the person or people commenting or staring.

'Why do I look different?'

Children start becoming curious about their appearance from an early age.

Use simple language that is appropriate for their age and experiment with drawings, stories and games to explain things. As they get older, tell them in more detail about their condition.

“Be open and honest with your child,” says Helen.

“Having something to say and knowing a bit about their condition will help them cope with their disfigurement and with other people’s reactions to it.”

Listen to what they say and help them understand their condition. Encourage them to ask questions.

'My baby's birthmark'

A week after Eloise was born, her mum, Claire Lewin, noticed a small red rash behind her left ear.

Watch a video about haemangiomas and how to treat them

Claire showed it to the midwife, who said it was nothing serious and that it would go away. But it didn’t and, within a couple of weeks, it had grown into the size of a "bright red golf ball". It was diagnosed as a haemangioma, a collection of tiny blood vessels that produce a raised mark on the skin.

At six weeks old, Eloise was put on a course of steroids, which she continued for seven months. She also had an MRI scan to make sure the haemangioma was not growing internally, which could have affected her breathing or hearing.

Claire, who lives in Sunderland with husband Barry, says she initially struggled to deal with Eloise’s condition. “It was awful,” she says. “I wanted her to be perfect.”

Claire slowly gained confidence and began to come to terms with her child's condition from speaking to other parents with similar experiences. Her advice to parents is to research their child's condition and contact support groups.

"Don’t be afraid to take your child out. Your child is perfect. They may be different, but they’re beautiful.”

Being stared at

Get tips on coping as a parent of a child with a birthmark or unusual appearance

The stares were the hardest to manage. “People can be so ignorant,” she says. The stares started to make Eloise uncomfortable, even though she was too young to understand why people were looking. “I’d tell her, ‘They’re looking at you because you’re beautiful’,” says Claire.

One woman stared so hard she nearly walked into a lamppost. “She seemed embarrassed that I’d noticed her,” says Claire.

Once, on a bus, a drunken man sat next to them. “He noticed Eloise and said, ‘Eurgh, what’s that?’ and poked his finger in her face.”

Claire hid her outrage. “I didn’t want to cause a scene and the man was drunk,” she says, “but I was upset that no one on the bus intervened.”

Although she has got used to Eloise’s appearance, Claire hasn’t got used to the stares. “When I see people staring, I stare back and I say, ‘It’s not nice to be stared at, is it?’”

Sharing similar experiences

There were times when Claire felt low and didn’t want to leave the house. “But I realised it wasn't doing Eloise any good, because she could feel my negativity,” she says.

She gained strength from researching her daughter’s condition on the internet, talking online to parents with similar experiences and talking to the Birthmark Support Group.

“It’s nice to get feedback from other parents who’ve gone through the same experience. Talking about it helps.”

When Eloise reached nine months, the haemangioma started to stabilise, and by 21 months, it was shrinking. Surgeons are waiting to see how far it will recede before operating.

Eloise has been shown photos of other children with birthmarks to show her that she’s not alone. “She calls it her ‘Hemy’,” says Claire.

The toddler is still too young to be self-conscious about her birthmark. “It doesn’t bother her,” says Claire. “She doesn’t understand what it is at her age.”

Claire no longer feels the need to cover Eloise’s face in public. “Her birthmark is a part of who she is, and to me, she’s beautiful,” she says.

'My new life after face surgery'

For Sue Morgan-Elphick, life began at 28. Until then, she kept her true self locked away because of her crescent-moon-shaped facial disfigurement.

'I’d feel like the ugly sister going out with a group of Cinderellas'.

Sue Morgan-Elphick

At school, she was called Concorde or Anteater because of her nose and chin. Her smile was more a gurn than a grin.

“I used to dye my hair outrageous colours like Annie Lennox, and wore fluorescent green and blue eye shadow to distract from my peculiar-shaped face,” she says.

As she got older, she wore a scarf around her face in public, never posed for photographs and avoided social events.

“I’d feel like the ugly sister going out with a group of Cinderellas,” says Sue, from Barrow-in-Furness. She’d never had a boyfriend and didn't have many friends.

As a child, different areas of Sue’s face grew at different rates. The cause of her condition is unknown and no one else in her family has it.

“My lower jaw and chin lengthened and curled up until I could gurn like Les Dawson, with my chin touching my nose. I couldn’t close my jaws together.”

She came across as miserable and sour. “People always assumed I had a grumpy personality, though inside I have always been outgoing and cheerful,” she says. “I moved around an awful lot as an adult; I couldn’t put down roots.”

Mentally prepared

Sue trained to be a nurse and found a job working in an oral and maxillofacial unit in London, with leading facial surgery consultant Iain Hutchison.

“I watched him cutting and rebuilding other people’s faces and it didn’t bother me at all, so I asked if he could do anything for me. ‘Yes, you do look rather abnormal. Come to my clinic on Wednesday,’ he said."

And so it began. She had meetings with a psychologist to make sure she was mentally prepared for life after surgery. She wore braces for 10 months and had some extractions to adjust her teeth before the operation.

During this time she met her future husband, George, on a holiday with friends. “He saw me at my worst,” she says.

In 1995, Sue’s top jaw was broken and brought forward nearly 5cm. Her cheek bones were reshaped from bone grafted from her hip. Six titanium plates and screws were inserted to hold the bones in place.

After eight hours of surgery, Sue woke up feeling groggy and in pain, thinking, “What the hell have I done?” After a few days she had her first look in the mirror. “I couldn’t believe the transformation,” she says.

'I feel reborn'

A few weeks after the operation, she was waiting for a friend at Euston station. “She walked past me and did a double-take and said, ‘Oh my God’. She didn’t recognise me,” Sue says.

It took nearly a year for the swelling from the operation to go down. Sue says she feels reborn since the operation, able to face life with new confidence and hope.

“My natural cheeriness, which had been locked in all those years, suddenly burst out,” says the mother of two. “I never used to smile. I had always avoided photos. I’ve got hundreds now.

“When I was first whistled at by builders, it gave me the biggest buzz ever. I felt as though I’d lived 28 years behind a face that wasn’t mine.”

But the pre-operation Sue has not completely gone. “She's been boxed away, but she’ll always be a part of me,” says Sue.

“Being that person for 28 years made me a better person, able to empathise with people and carry on my work as a nurse.”

'My daughter had birthmark surgery'

A week after Rebecca was born, her mother, Gillian Lindsay, noticed a tiny red dot between her daughter’s nose and eye.

Watch a video about haemangioma birthmarks

The dot was growing, so Gillian sought medical advice. Consultants diagnosed the growth as a haemangioma – a collection of tiny blood vessels that produce a raised mark on the skin.

“I was told it would shrink with time,” says Gillian, 32, from Glasgow. Cortisone treatment was started, but it didn't stop the growth.

By the time Rebecca was two, the birthmark had grown to the size of a large egg. “The reactions of people in the street made my day difficult,” says Gillian.

“I did have my weak moments when I thought I just couldn’t let my daughter start school with this on her face."

Severe bleeding

She read an article about Saving Faces – The Facial Surgery Research Foundation, a charity in London founded by face surgery expert Iain Hutchison.

She wrote to him and enclosed a photograph of Rebecca, then aged two-and-a-half. “He called me and arranged for us to come down,” says Gillian. Rebecca got a referral, from her GP, to Hutchison’s unit at the Royal London Hospital in east London, so that the operation would be done on the NHS.

After discussing the options with Hutchison, the family opted for surgery. They were worried about Rebecca rupturing the haemangioma, which could lead to severe bleeding.

"The haemangioma would have interfered with Rebecca's facial growth and eyesight," says Hutchison. “Rebecca was in theatre for about three hours. It went smoothly.”

A discreet scar is all that remains where the haemangioma once was.

'Life-changing'

"She’s improved remarkably,” says Gillian. “She’s popular at school. She’s had no bullying about her scar. She decides herself whether or not she wants to tell people about it.”

While Rebecca may have been too young to understand what was going on, to Gillian the operation has been a huge relief.

“It’s been absolutely fantastic,” she says. “I’m much more relaxed now. Surgery has been life-changing for both of us. Just to see her like a normal little girl was all I wanted.”

Shortly after the operation, the family was invited onto the Richard and Judy TV chat show with Hutchison to talk about their experience.

Gillian says parents concerned about birthmarks should read as much as possible about the condition and consult a birthmark specialist when seeking medical advice.

'Cherubism and me'

Victoria Wright was born with cherubism, a rare genetic disorder that causes an over-growth of fibrous tissue in the face.

"For every person who stares, there are a hundred others who don’t, and who will like and respect you for who you are."

She has been called names like fat chin, Buzz Lightyear and Desperate Dan. At school, a girl threatened to punch her eyeball "back into place".

Yet, despite the difficult years she has had growing up with her condition, her self-assurance is clear. Victoria Wright speaks engagingly and with humour about living with a facial disfigurement.

“A girl used to draw pictures of me in class and share them around,” says Victoria, from London.

The tormenting only made her more determined to stand up for herself. “I have a very strong sense of who I am and how I want to live my life,” she says.

“I don’t want to hide at home, afraid to go out and afraid of other people. If they have issues about how I look it’s their problem, not mine.”

First signs

Victoria was about four years old when the first signs of cherubism appeared. “My mum was brushing my teeth and she noticed they weren’t in the right place.”

Cherubism, named after the chubby-cheeked, angelic figures in Renaissance art, runs in Victoria’s family, although in a much milder form.

It was thought that Victoria's condition would regress after puberty, but it didn’t. Instead, her jaw grew larger and it began affecting her eyes.

She had surgery to relieve the pressure on her eyes, which saved her eyesight, but she still suffers from headaches due to her impaired vision.

“Cherubism isn’t a painless condition,” she says. “I do get twinges of pain. My head is very heavy. Doctors say it’s as heavy as a bowling ball.

“I’ve been offered surgery on my jaw to make it smaller, but I don’t think it would improve my appearance,” she says. “I’m used to the way I look.”

Victoria has been falsely portrayed in the media as being anti-cosmetic surgery because of her decision not to have the size of her jaw reduced.

She is not against surgery and says: “I’m certainly not against people with disfigurements having surgery, but I’m fine with the way I look. Why should I have the surgery for other people?

“I’m happy with my face most days. After all, I’m a woman, and no woman is completely happy with the way she looks. But I’m not going to change myself to make other people happy.”

Unsettling stares

Victoria has never got used to the stares, although she understands that it’s a natural human reaction. “I try not to take it too personally. We all stare, even me," she says.

“As a teenager, I used to get angry, but that doesn’t do any good to you or the person staring. It just reinforces the stereotype that people with disfigurements must be angry, tragic or scary.

“If I find myself being stared at in an aggressive way, it can be unsettling. But I don’t let it get to me. That’s because I’ve got a good sense of who I am.

“If someone’s staring out of curiosity, I just smile and nod to show them I’m a human being and there’s nothing to be scared of.

"Most of the time, people smile back. That’s a good feeling, because I know I’ve made a small connection with them.”

The support she’s received throughout her life from family, friends, teachers and Changing Faces, the disfigurement charity, has been crucial.

The charity recently launched a website called iface for young people to discuss disfigurement, offer and receive advice, and share personal stories.

“There are fantastic role models at Changing Faces,” she says. “Lots of staff members there of all ages have a facial disfigurement.

“As a teenager meeting them, I felt, 'Wow, you can have a career, and be happy and confident with a disfigurement’.

“Sometimes you can feel isolated, especially if you have a rare condition. It’s difficult if you don’t see anybody else in the street like you. Getting peer support is so important.”

Changing perceptions

Victoria is studying law part-time and plans to be a solicitor, perhaps representing people who have experienced discrimination.

She says that 50 years ago, the world was a much harder place for people with disfigurements. “Now we have people with disfigurements with successful careers, and we are no longer hidden away.”

Legal protection through the Disability Discrimination Act and awareness campaigns led by Changing Faces are helping to change public perceptions.

“I would strongly encourage anyone with a disfigurement who feels they need support to get in touch with Changing Faces,” says Victoria.

“I know it can feel as though life is hard if you have an unusual appearance. You just have to be brave and take that first step out of the door.

“For every person who stares, there are a hundred others who don’t and who will like and respect you for who you are.”

Handling reactions to facial disfigurement

Learning how to be confident in social situations and handle people’s reactions is an important skill for anyone with a disfigurement.

If you have an unusual appearance, it can be common for people to look at you in a way that you don't necessarily appreciate.

“The individual can feel as if they’re on display or on show. Other people’s stares or questions can feel intrusive,” says Helen Smith of the charity Changing Faces, which supports people living with facial disfigurements. "That can be hard to deal with."

It’s understandable that you may want to avoid situations that make you feel anxious. However, by not facing challenging situations, your fears about them can never be disproved and your anxiety may grow. This will undermine your confidence further and stop you from getting the most out of life.

“It’s important to learn effective skills to help you feel more confident and self-assured in social situations of all kinds, and handle other people’s reactions to your disfigurement," says Helen.

“There are strategies you can use to appear more confident. The more confident you are, the more positive responses you will get back."

Having a set of responses ready to use when people stare at you or ask about your appearance can be helpful. Read on for tips.

Positive body language

In person, a lot of our interaction doesn't even involve speaking. Think about what your body language is saying.

Maintaining eye contact with someone, a firm handshake, remembering people's names, speaking in a confident tone, standing tall and keeping your shoulders down are all positive forms of communication.

Learning some coping skills and practising them could help you feel more confident in social situations.

“It’s important to have a range of ways to respond to questions, depending on the situation and your mood. Sometimes you don’t want to have to explain your birthmark for the third time that morning,” says Smith.

Think about previous times when you handled a situation well and times when it would have been better to react differently.

Fielding questions about your appearance

Work out in advance different ways to respond to people. Then, if someone asks you about your disfigurement, you can use the response that seems most suitable at the time.

In some situations, you might find it helps to bring up the subject of your disfigurement, to put people at ease or if they seem curious. This gives you more control over the situation and can stop the anxiety of waiting for others to raise it.

Clare Cox, 32, found this approach helped her at the hairdresser. "I always wear my hair down and usually it covers up a lot of my disfigurement and scarring," she explains. "So I used to find going to a new hairdresser very stressful, because I didn't know how they were going to react when they pulled my hair back and saw what was underneath. This made me feel really tense, and they probably felt uncomfortable too."

"One day, about 10 years ago, I thought 'this has got to stop'. I decided I needed a strategy, so I came up with a line that I could say, with a confident smile, to any new hairdresser at the start of the appointment.

"The line was: 'I just want to let you know that I have quite a lot of scarring on the left side of my face, but don't worry, it isn't recent or painful for me. I just wanted to warn you so it doesn't come as a surprise.'"

Clare found that this simple strategy really worked, and that taking the initiative removed any anxiety from the situation. "The responses I got were always reassuring, and I never had to deal with any further questions about my face. Going to the hairdresser is now a treat, not an ordeal."

How you react to staring

When people ask about your face, try not to assume that they're being hostile. Most are only curious or even concerned, as you might be yourself.

If someone stares and you want them to stop, look back, smile and hold the other person’s gaze momentarily. They will hopefully smile back at you and then look away.

If the staring continues, look back and hold their gaze, while raising your eyebrows to show them that you’ve noticed their staring.

If you decide to say something, you could use a number of different approaches:

• "Hello." (This lets them know you have noticed them looking at you.)
• "I would prefer it if you didn't stare at me." (A firm yet straightforward response.)
• "My appearance seems to be bothering you. It doesn’t bother me." (Confident, firm and clearly labelling the person staring as the one with the problem.)
• "Your admiring glances are beginning to embarrass me!" (The confident and humorous approach.)
• "We have clearly met before, because you can’t seem to take your eyes off me." (Humorous, but making the point that their behaviour is intrusive and inappropriate.)

“It’s probably better to have a quick and effective reply ready, rather than something that could start a discussion or even an argument,” says Helen.

Keep practising your coping skills

“If you’re worried about forgetting your responses, write them down and keep them in your wallet or bag, so you can refresh your memory from time to time,” says Helen.

You may find it helpful to think about different ways of answering the same question and either closing the subject or moving the conversation on. For example:

• “I was burned when I was younger. It was a long time ago. I don’t talk about it now.” (This is clear and brief.)
• “I was burned when I was younger, but fortunately smoke alarms have reduced the number of injuries like mine.” (This shows that you're confident and at ease talking about it, but encourages a more general discussion rather than purely personal.)
• “I was burned when I was younger and I’m going in for more plastic surgery soon. They're going to take a graft from my leg…” (This shows that you're confident and happy to discuss personal details.)

As you get more comfortable with these responses, you’ll feel increasingly relaxed in social situations and become less self-conscious in public.

"Learning strategies like these is a skill in itself," says Helen. "It takes time and effort before it begins to feel really natural.

"Things don’t always work how you want them to straight away. Take time to find what works for you and what doesn’t."

Talk to friends or family about difficult or challenging times, and listen to their support and advice.

If you keep at it, you'll increase your chances of having more positive social experiences, and these will enhance your confidence and self-esteem.

Facial disfigurement at work

The Equality Act 2010 protects people with "severe" disfigurements from discrimination at job interviews and in the workplace.

But when Changing Faces asked people about their working lives, the responses showed that:

• 43% said they’d decided not to apply for a job because they believed their face wouldn’t fit, compared with 4% of people who did not have unusual facial features
• more than a fifth (22%) had been told by an interviewer that they wouldn’t get a job because of the way they looked
• nearly half (46%) said an interviewer seemed uncomfortable with the way they looked
• 55% thought that their colleagues treated them differently

The research led to the launch of Changing Faces' "What success looks like" campaign in 2014, which aims to provide employers with best practice guidance, and advice to people with disfigurements who may be struggling to find work.

Find out more about "What Success Looks Like" on the Changing Faces website.

There is also general advice on NHS Choices for people who are experiencing bullying at work.

Facial surgery

Facial surgery can be life-changing. As a patient, you want to be confident that the treatment you're being offered is the best available.

It's estimated that more than half a million people in the UK have a significant facial disfigurement, according to the charity Changing Faces.

Whether it’s a birthmark, congenital condition, or a disfigurement caused by injury or disease, you can be treated by the NHS after a referral from your GP.

While medical treatment can help to make a disfigurement less noticeable, the treatment's success depends on the nature of the condition, and it's rarely possible to remove it completely.

Psychologists warn that if you believe surgery will solve everything, you are likely to avoid ever accepting yourself fully, and this will affect your emotional wellbeing.

Saving Faces: The Facial Surgery Research Foundation is dedicated to improving research into the treatment of all forms of facial disfigurement.

The UK charity has surgeons and researchers throughout the country collaborating to work out which treatments offer the best results.

Founder Iain Hutchison, a consultant oral and maxillofacial surgeon, says clinical trials on facial surgery aren’t like testing a new drug.

“The surgery is irreversible, whereas the effects of a drug wear off,” he says. “There’s been no randomised study to compare the efficacy of different types of facial surgery.

"The type of treatment offered depends on the individual surgeon. Our research aims to identify what works best.”

'My rebirth'

Iain Hutchison, who works at the Barts and The London hospitals, sees the difference surgery makes to his patients.

“It allows them to fulfil their intellectual and psychological potential,” he says. “Not only do they see themselves differently, but so does the rest of society.”

Former patient Sue Morgan-Elphick says facial surgery has allowed her to come out of her shell and show her true personality. Until she had surgery at the age of 28 to correct a bone disorder, which had left her with a crescent-moon-shaped face, she had always kept her true self hidden.

She describes the surgery as a rebirth. “My natural cheeriness, which had been locked in all those years, suddenly burst out,” says the nurse from Barrow-in-Furness.

Iain Hutchison became interested in facial surgery while attending to patients in casualty, working on "people whose lives had been shattered in a moment in a road accident," he says.

“Facial surgery is challenging, not only because of its intricacy, but because it has a profound effect on the patient’s mind. I love the fact I deal not only with bones and soft tissue, but also with human emotions.”

Artist-in-residence

Iain Hutchison has set up an artist-in-residence in his facial surgery department. Portrait artist Mark Gilbert paints patients before, during and after surgery.

“The great thing about Mark’s pictures [pictured above] is that in them the patients are in control. They’re saying: ‘I am not a victim. I can survive this cancer, or this attack with a baseball bat.’ It’s a kind of catharsis – a turning point for them.”

An exhibition featuring the portraits of 30 patients was launched in 2000 at the National Portrait Gallery and has since toured the UK, Europe and the US.

One of the most striking works is a series of paintings of barrister Henry de Lotbiniere, who lost an eye and underwent 15 operations over 13 years, as surgeons chased the spread of cancer of the salivary gland.

Iain Hutchison says that, while there are obvious functional reasons for undergoing surgery, such as removing a tumour that might obstruct breathing, there are psychological reasons as well.

"It's valid to operate on a child if their disfigurement causes them to be severely emotionally disturbed," he says. "They're starting out in life. You want them to get the best chance."

"But there might not be the same urgency for someone in his 60s, who's happily married, has two children and still has all his physical and mental faculties."