The ugly truth about body dysmorphic disorder BDD is relatively common - it affects about one in 100 people (significantly more than schizophrenia; slightly more than anorexia). It typically starts in early teens and affects boys as frequently as girls. The causes of BDD are still unknown. "We know it runs in families and that there is a strong genetic component, but that doesn't explain the whole picture," Dr Mataix-Cols says, listing such factors as "appearance-related teasing" and bullying. "It's not clear if they simply trigger a pre-existing vulnerability or whether they have a proper causal effect," he adds. "It's an obvious thing to blame our image-obsessed society, but I don't think it really has such a major role," Dr Mataix-Cols says. However, Dr Katharine Phillips, a professor of psychiatry and human behaviour at the Alpert Medical School, Brown University, in Rhode Island, and a leading expert on the disorder, is not so sure. It's possible that the rate of BDD is increasing as women get bombarded with media images of perfection. Lots of studies have shown that the more you see images of perfection around you, and the more you compare yourself with those images, the worse you tend to feel about yourself. The point on which experts agree is its seriousness. Sufferers are compelled to take steps to mitigate the disaster they see in the mirror. Samantha was fixated on hair extensions and make-up. "I used to put a lot of make-up on, wipe it off, start again, for hours and hours," she remembers. Obsessive exercising is another compulsion. Photographing themselves on mobile phones and digital cameras is another. Sufferers repeatedly ask if they look fat/disgusting/ugly; overfocus on the appearance of other people ("comparison rituals"); pick at their skin. At her worst Samantha was checking her face in the mirror 80 times a day, sometimes for up to two hours at a time. People with BDD seek cosmetic surgery - about a quarter of BDD sufferers have actually had it - and avoid other people. Sometimes children drop out of school. "It is terrible for the young person's development because being around other people is extremely painful and anxiety-provoking, and in severe cases they can become housebound," Dr Mataix-Cols says. BDD also raises the spectre of suicide, with a rate approximately 45 times higher than in the general population. And yet, despite it being such a serious problem, BDD is under-reported and undertreated. "People with BDD are afraid they will be considered superficial or vain," Dr Mataix-Cols says. It is hard to go to your GP and say, I think my nose is too big. So what often happens is they report an associated problem such as low mood or anxiety, but they won't say what the reason for that is. The result is that the Maudsley treats only a "handful" of new cases a year, with patients ranging in age from 12 to 18, typically the more extreme cases from across the country. Less severe cases tend to be treated at local Child and Adolescent Mental Health Services (CAMHS) - if they're lucky. "It doesn't get picked up as quickly as we would like," Dr Mataix-Cols says. We know that if you live outside a big city your chances of getting access to good psychological treatment may be less. Illustration: Wesley Allsbrook I meet Samantha in her home in north Wales, where she lives with her father, Gareth, 57, a maths teacher in a comprehensive school, and mother, Patricia, 44, who works in IT. Her sister, Alice, who is four years older, has recently graduated from university and lives nearby. Now 17, Samantha is pretty with porcelain skin, a soft accent and a demure manner. The only hint of her former problems is an encyclopedic knowledge of make-up. She says her BDD has abated. I want to look nice but it doesn't really bother me that much any more. I've got friends again. The warnings started in autumn 2006, when Samantha started secondary school. She had changed schools two years earlier, and now felt on her own again because most of her friends were going to a different school. I was really nervous and I was angry with Mum and Dad because I had taken so long to make friends and then I was leaving them again. Samantha began to experience strong feelings of anxiety. "I would drive her to school and I had to reach a bridge in a village by the time the quiz came on the local radio, and if I didn't she would refuse to go to school," Patricia says. Samantha became convinced that her mother would have a traffic accident. Getting to the correct spot was a way of safeguarding her mother. "I was very close to her and I didn't want to be away from her," Samantha explains. A GP diagnosed obsessive compulsive disorder (a cousin of BDD), and Samantha was referred to the local CAMHS where she had one-to-one sessions with a community psychiatric nurse. "I asked the doctor how long it would take to sort out," Gareth recalls. He said six to nine months. But it didn't quite happen like that. Towards the end of Year 7, Samantha's group of five friends split into two factions. Insults were fired back and forth. She was teased about her "chubby" cheeks - "I was one of the shortest and fattest" - and for being so quiet. The other girls shrugged the insults off. But Samantha started getting panic attacks every time she went to school. I didn't want people to see me. I worried about what people thought of me. By early March 2008 her OCD was under control and she was discharged from CAMHS. But then one morning she came downstairs with her shoulder-length hair chopped so violently it looked as if she had been assaulted. "She handed me this plastic bag and it had all her hair in it," Patricia says. She had cut her hair off overnight, big chunks of it. "I was trimming away bits to try and change the shape of my face," Samantha says, "but then I got frustrated because it wasn't even on both sides and I just kept going, cutting away." The hair-cutting incident was followed by more strange behaviour. She would spend long hours looking in the mirror in her bedroom. If she wasn't looking in her bedroom mirror it was the one in the hall, or wing mirrors on the car, or any reflective surface - a spoon, shop window, bottle of Coca-Cola. In late March 2008 Samantha refused to go to school at all. "When a child says no, it's the most powerful thing because we literally couldn't do anything about it," her mother says. Samantha's formal education ended in term two of Year 8. She was given a diagnosis of BDD by a consultant child and adolescent psychiatrist from their local CAMHS in April 2008, and from March to May that year she mostly confined herself to her bedroom. This was the room where she would study photographs of celebrities, ticking off their attributes on a mental checklist. Taylor Swift: "tall, thin, balanced body, no lumps and bumps"; Tulisa: "big boobs, thin body, blond hair, tanned"; Beyoncé: "quite big and curvy but everyone finds her attractive and perfect." She would then feel wretched because she was "just plain and fat and disgusting." This was the room where, when her GP decided that she should attend a child psychiatric unit in April, she pushed a chest of drawers against the door and screamed, "No!" The room where her various grooming rituals - trimming her fringe, plucking her eyebrows - were joined by cutting, as she started self-harming. This is the room where, in September 2008, her mother found empty packets of paracetamol and antihistamines. "I remember being quite disappointed it hadn't worked," Samantha recalls. I couldn't even kill myself properly, and that made me feel worse. A community psychiatric nurse visited for an hour once a week to talk about her feelings and to try to take her out. She also had a home tutor, was put on Prozac, and was referred to a child and adolescent psychiatric clinic a 20-minute drive away, where she received group therapy with other teenagers suffering from such disorders as depression and anorexia. The plan was for her to attend daily, but she would often refuse to go. The family went to the unit, too, for family therapy once a fortnight. In October 2008 a second psychiatrist diagnosed BDD. In January 2009 she was given a morning place at a specialist education unit and an afternoon at the day unit. But attendance at both was erratic. "She was not coping well," Patricia says. Samantha then took another overdose in April 2009, and in May her parents found her dressing-gown cord hanging from a tree. "I put it out a few days before," Sammantha says, "to prepare." In June, after her third suicide attempt, she was admitted to a high-level psychiatric unit a 45-minute drive away, where she was an inpatient for seven weeks. She was treated with Sertraline, an antidepressant, but was given no specific treatment for BDD. Once discharged, she continued to be treated at the day clinic and by a community psychiatric nurse at home. During this period it was difficult for the family to operate at even a basic level. The most routine events became fraught with difficulty. Samantha wouldn't leave the house until she had completed her checking rituals. "We would plan to go out for a meal, and we would be waiting and waiting for Samantha to get ready, to the point where we couldn't go," Gareth says. Patricia removed all the mirrors in the house. It was exhausting and rather than getting better with treatment, Samantha's condition got worse. The first suicide attempt had put the family into a constant state of red alert. "One of us would always be here with her, we couldn't leave her on her own," Gareth says. Samantha defiantly searched for knives and pills. Gareth decided to buy a safe. Patricia and Gareth are still stunned by what happened. They emphasise how out of place they felt in this "weird old land" of mental health services; how "they didn't fit into the box" of a dysfunctional family. They see themselves as very close, very stable. They met when Patricia was 19 and Gareth 31, and are in many ways polar opposites: he is pragmatic, likes to make lists, is self-contained; she is volatile, creative, open-hearted. Patricia works hard at being a good mother, as her own parents separated when she was seven. I know how important it is to provide a stable base for the children. Despite this, they still went through three months of marriage counselling to help them cope with the stress. In June 2009 Patricia gave up her job. I couldn't be relied on. They were asking me when she was going to get better. And I said, I don't know. But Alice was still at university and needed her rent paid, so Patricia worked from 10pm to 4am at a supermarket. It was so I could be with Samantha during the day, but then I couldn't sleep because I had to keep an eye on her. Patricia's approach was to co-operate with Samantha's demands. She reassured Samantha 20, 30, 50 times a day when asked, "How do I look?" She spent £200 on hair extensions (which Samantha ripped out three days later). She put up with Samantha's anger. ("I'd shout at Mum, "Why have you made me like this?" And I'd push her.") And she humoured Samantha's alarming dependence on a Superman T-shirt from H&M because by 2009 Samantha was having "good face days" and "bad face days." The Superman T-shirt was key to a good face day. But not a guarantee. "A good face day could morph into a bad face," her mother says. "We would leave the house to go to the [day] unit and halfway there she would say, "Oh no, bad face is here," because she'd looked in the mirror, and then we'd have to come home." I was going in [to work] and seeing teenagers all the time and thinking, why can't she be like them? Gareth admits. His role was to support Patricia. "But you get to the point where you don't want to talk about it any more," he says. Experts acknowledge that BDD is extremely difficult to treat. "It is quite complex and the risk of suicide makes it even more difficult to manage," Dr Mataix-Cols says. However, over the past 10 years two forms of treatment have proved effective: a combination of cognitive behavioural therapy (CBT) and antidepressants, which act on the brain chemical serotonin and are thought to have an "anti-obsessional" effect. But the challenge is identifying BDD and treating it correctly. Of course CBT is widely available, but what is not available is highly specialist CBT for BDD in young people. What we are doing is adapting traditional CBT techniques to this particular problem and this particular age group. This is novel and unique to the Maudsley," Dr Mataix-Cols says. In June 2009 Patricia went online and typed in "BBD" and "teenagers." I was desperate. My child was at the highest CAMHS level in Wales and not getting any better," she says. Over 16 months, Samantha had been seen by two consultant psychiatrists, two family therapists, two clinical psychologists, two occupational therapists, outreach workers, home tutors and an educational psychologist. "I said to one of the psychiatrists, "What does it take to help my child?"" Based on what she discovered online, she asked Samantha's consultant to refer her to the Michael Rutter Clinic at the Maudsley. On July 30 2009 the family set off for London. "I was thinking, "My God, what if it's my fault? What if it's nothing?"" Patricia says. Samantha was put in a room at the Maudsley and there was this enormous team of people and I was praying - I'm not religious, but I was praying, please God, see what is going on - I really felt this was the last chance to save her life. Using a scale of 0 to 40, Samantha's BDD was marked at 35: severe. "One of the reasons given for this was the lack of focused CBT," Patricia says. The validation was unbelievable. We were being told, this is not your fault. This is as real an illness as any physical illness. But then they said, "There's no funding, we can't treat her." The solution was there and then it was snatched away. Samantha's funding (from her primary care trust) covered only three hours of treatment (the assessment and one session). Funding for specialist treatment outside Wales requires approval from Health Commission Wales. "I have no idea why this was not suggested sooner," Patricia says. I did not even know it existed or was an option until I started getting a bit bolshie. If Samantha had lived in England or Scotland, the treatment would have been funded by the National Commissioning Group. Samantha's bad luck, as her parents saw it, was to come from Wales. On October 2 2009 Patricia attended a surgery of her local Welsh Assembly member and asked for help in securing funding. Dr Isobel Heyman, a consultant child psychiatrist in the Child and Adolescent Department of the Maudsley, wrote to Health Commission Wales, recommending that Samantha received treatment. As did Samantha's consultant. Two weeks later the funding was approved: for treatment only, not travel (which was to cost the family more than £1,000 by train). On October 15 2009 Samantha started the first of 14 sessions. Treatment included learning the difference between normal and excessive appearance concerns, drawing up an "individualised treatment plan" (with Samantha and her parents) and "exposure therapy." For this, Samantha was asked to compile a list of anxiety-provoking scenarios and measure each for distress on a scale of 0-100. She came up with 150. For example, not wearing her Superman T-shirt all weekend: 80. Not having enough time to put in her hair extensions before going out: 90. Not looking in a mirror all day: 100. "We start with the very easy ones and work up, encouraging the patient to face the situation rather than avoiding it, until that anxiety subsides," Dr Mataix-Cols says. People with anxieties feel they will be anxious for ever and that the anxiety will grow exponentially, but in fact what happens is, once they face the feared situation, the anxiety drops with time and it becomes easier. "It wasn't rocket science," Patricia observes. When he told us, it was like having admission to a secret club. This doesn't belong only in a specialist hospital in London. It can be replicated anywhere in Britain. Samantha now has a future thanks to CBT. Dr Mataix-Cols agrees. Last November the Maudsley set up a trial to test the efficacy of BDD-tailored CBT and once completed the aim is to help roll out a programme for young people to be treated swiftly and effectively in their local area. So far the team has recruited 12 children for the trial; it needs 30. In January 2010, at the end of treatment, Samantha's BDD score had dropped from 35 to 19. For the next six months her parents continued the programme and by June 2010 it was down to eight. Two years on, Samantha has six GCSEs and is training to be an accountant (she wants to specialise in forensic accounting). "She is happy and confident, living her life and having a great time of it," her mother says. "I'm making up for lost time," Samantha adds. She is still on a very small dose of antidepressants and sees a consultant psychiatrist every three months. BDD still lurks under the surface, she admits, but she is now able to "reel in the emotions." At one point during our interview, I tell Samantha she looks lovely. And the girl who could not accept compliments for two years; the girl who would not allow herself to be seen because even thinking about going out on a bad face day scored an anxiety level of "100 billion," looks me in the eye. "Thank you," she says. And smiles. Some names have been changed. For information about the Maudsley trial visit ifeelugly.info