The case in summary • Guro Øksøy Thorsen lost all her hair when she was three years old due to the autoimmune disease alopecia totalls.• She prefers people to ask questions about her condition, rather than assume she has cancer.• Leader Evy-Ann Engdal Hamre in the Alopecia Association of Norway believes that it is important to be open about the disease and that Thorsen’s openness can help others who suffer from alopecia.• Secretary General Lilly Ann Elvestad in the Joint Association of the Disabled encourages people to ask questions of people with disabilities to increase understanding and avoid invisibility . The summary is made by an AI service from OpenAI. The content is quality assured by news’s journalists before publication. 22-year-old Guro Øksøy Thorsen from Sandefjord has become used to her standing out, because she has no hair. – I notice stares and that I’m looked at on the street, because people see something different, says Thorsen. Already when she was three years old, she lost the hair on her head, eyebrows and eyelashes. Then she got the autoimmune disease alopecia totalis. Doesn’t want a wig She dropped the wig in high school. – I had managed to build up the confidence that not having hair was part of my identity. So for me it felt more and more right to go without a wig, says the student, who has become involved in the Alopecia Association in Norway. Guro wore a wig for a long time. – But I became more comfortable with the fact that Guro without hair is who I should be and that is who I am. Photo: private September is International Alopecia Month. Thorsen knows that people wonder why she doesn’t have hair. She would rather answer questions than have people assume the reason. Some give her extra sympathy, because they think she has cancer. For her, it is important that the questions are asked in a respectful manner. Moreover, it is more natural to answer, if she knows that it is a person she will meet again. – On the whole, I think it’s okay for people to ask. But not everyone copes with the questions about the disease as well as she does. Guro Øksøy Thorsen is studying sociology in Bordeaux in France this semester. So far, she has received few questions about the disease, but has answered when someone has asked. Photo: private For many people, losing their hair in whole or in part is painful. They may hide the illness from their spouses and parents. Some have not seen themselves in the mirror without a wig for many years, says Thorsen. Do you dare to ask if someone has a visible illness? No, it’s hard to ask such things, because I don’t want to hurt anyone. Yes, I ask in a nice way if I’m wondering. No, I have nothing to do with that. No, I don’t want to pry into other people’s privacy. Show result Helps others stand out The Alopecia Association in Norway is keen to increase knowledge about the disease. It is good that Thorsen is standing up, says leader Evy-Ann Engdal Hamre. This can lead to the disease becoming more known, people with alopecia feeling less ashamed and some people may be less afraid to show their hair loss, she believes. This is alopecia Alopecia is a general term used for hair loss and is a skin disease. There are different forms of alopecia. Alopecia totalis: means that all the hair on the head falls out. Alopecia universalis: both head and body hair fall out. Alopecia areata is a disease where all the hair falls out in patches, because white blood cells around the hair follicles create an inflammation. One can also lose hair on the eyebrows, eyelashes, beard, armpits and around the genitals. Some may also get pits in the nails. Alopecia areata affects approximately 2 in 100 of the population and can occur at any age. In most cases, hair growth starts again after a few months. The Norwegian Alopecia Association has approximately 1,300 members. Source: Store norske lexikon and Helsenorge According to Helsenorge, alopecia areata, i.e. patchy hair loss, affects two out of 100 people. – If you think about it, it is pretty much guaranteed that you will meet someone, or have someone in your circle of friends, who has alopecia throughout their life, says Hamre. The disease is relatively unknown to many, says manager Evy-Ann Engdal Hamre of the Alopecia Association of Norway. It is individual how people experience the disease. Hamre therefore finds it difficult to give general advice. Some may hate you asking, while others think it’s awesome. Therefore, you have to look at the situation and the person you meet, she says. – But rather ask those who have the disease if you have any questions, rather than go behind their back and talk about it with everyone else. Kjerstin became a wheelchair user as a 17-year-old and wants children to ask. I think many people are made invisible. Others may also be asked questions about illness or disabilities. Secretary General Lilly Ann Elvestad of the Joint Association for the Disabled says it is up to the individual whether her members want it. General secretary Lilly Ann Elvestad of the Joint Association of the Disabled believes that many people do not mind being asked about their illness or disability if the intention behind the question is good. Photo: Frode Meskau / news Elvestad believes that many people do not dare to ask about other people’s illness. But questions can also contribute to an increased understanding of what it is like to have a functional impairment. She is concerned that the intention behind the question must be good and not pure curiosity. – Many people with a disability can be met with a bit of silence or perhaps invisibility. It can be just as painful as being asked questions that you find difficult to answer. Published 11.09.2024, at 12.40 p.m
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