– It is challenging and tough to face comments, stares and prejudices every single day, says Emma Stadaas (20). Emma was born with the rare diagnosis of Treacher Collins syndrome. A syndrome that affects her face. Underdeveloped jaw. Small chin. Ear lobes only. A lot of bullying As a child, Emma quickly became aware that she had an appearance that stood out. But it was only when she started primary school that she encountered prejudice. – I had not known that my appearance would be a problem for others. But then I realized. Here is Emma in the South as a six-year-old. Photo: Privat Here is Emma in the South as a six-year-old. Photo: Private Emma was bullied. Both physical and mental. – I received many comments. Was beaten and kicked. Before she started school, she was social and bubbly. Now she changed. – I became very uncertain and scared. I became introverted and lost my confidence. Many operations Emma has been operated on so many times that she has lost count. – Whether it is 55 or 65, I do not know. Most of the operations have been important to her quality of life. To breathe better, eat or talk. But not all. – Eye, ear and nose operations are done for cosmetic reasons. Emma has operated on her ears several times. She uses a hearing aid and the operations are only for cosmetic reasons. Photo: Bård Nafstad / NRKEmma has operated on her ears several times. She uses a hearing aid and the operations are only for cosmetic reasons. Photo: Bård Nafstad / news Applies to many young people Emma is one of many young people in this country with an appearance that clearly stands out. The Center for Rare Diagnoses in Oslo estimates that between 8,000 and 9,000 young people in Norway have a different appearance due to a diagnosis. Johanna Kling is a researcher. She has worked for the project at the Center for Rare Diagnoses at Oslo University Hospital (OUS). Photo: Bård Nafstad / news The examples are many. – There can be conditions that affect the shape of the head, skin diseases, acne (pimples), scars and burns, says researcher Johanna Kling, who has worked at the centre. Staring and comments are common. – Many people tend to avoid social situations and develop social anxiety, says Kling. – Young Face It helps Now the Center for Rare Diagnoses in Oslo has launched a self-help tool online. Ung Face It is for young people between the ages of 12 and 17. The tool comes from England, but is adapted to Norwegian youth. The techniques used are, among other things, taken from cognitive behavioral therapy. Photo: Screenshot Tasks and activities should make the young people more confident in themselves when meeting others. The center has been researching the effect for four years. – The research has shown that Ung Face It helps. It doesn’t help everyone with everything, but many feel better after trying the program, says Johanna Kling. She says it can also be used even if you are under 12 or over 17. Can it also help other young people who are dissatisfied with their appearance? – A lot of the program is about having an appearance that others react to, but parts of the program can suit young people in general. It doesn’t hurt to try. – We were a bit stuck – I wish I had that offer when I was 12, says 20-year-old Emma. On the way into the teenage years, it was not always easy to know where to get help. – We were kind of stuck. Emma is happy that Ung Face It is now in place. She believes it will help many. She herself has received help and support from her family, health personnel, teachers and the Norwegian Craniofacial Association, of which she is a member. She says that her self-confidence has improved a lot in recent years. In August, Emma Stadaas gave a lecture for healthcare personnel about the syndrome she was born with and how she has experienced the encounter with the healthcare system. Photo: Bård Nafstad / NRKI August Emma Stadaas gave a lecture for healthcare personnel about the syndrome she was born with and how she has experienced the encounter with the healthcare system . Photo: Bård Nafstad / news – I notice that the anxiety triggers in large social contexts, but fortunately I have gotten better at handling this. A couple of years ago, Emma moved from Western Norway to Eastern Norway. She goes to school here. She has dreams for the future. – I dream of my own family, house and a job that I can enjoy. Here is Emma’s advice to others who have an appearance that stands out. Hey Hey Did you get any thoughts when you read this article? Feel free to send me an email! I have previously written, among other things, about social anxiety and rare diagnoses. Do you have any tips for other issues I should look into? I treat all information confidentially. Feel free to contact me!
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Ung Face It will help young people with looks that stand out – news Oslo og Viken – Local news, TV and radio
