Young people with port-wine stains in high school

Inventory of experiences
Students

The Dutch organization Curias is developing a toolbox for young people. In collaboration with Curias, the Dutch Association for people with a port-wine stain or Sturge-Weber Syndrome (Nv WSWs) has conducted research with a number of secondary schools regarding experiences of pupils with a port-wine stain.

With this toolbox, the Nv WSWs wants to help students deal with reactions from their environment and also help schools be more aware of what it is like for a student to have a port-wine stain and support the school can provide. The toolbox contains teaching material that is being made with and for young people with a port-wine stain: the so-called co-creation workgroup. During the first co-creation workgroup meeting, the experiences of young people with a port-wine stain in high school were discussed and collected. There are good and bad experiences. In this article, we give insight into some of these experiences.

Laser treatment

One of the youngsters tells that she had many laser treatments in high school. She found it remarkable that some teachers paid attention to this and others did not. Actually, totally ignoring it was even worse than the questions she got. Just after one treatment, her face was swollen, red and she extremely tired. This was very obvious but one teacher, who was her mentor, said absolutely nothing about it. She would have preferred that he had shown some interest and had at least asked her how she was doing. In seventh grade, another experience expert gave a PowerPoint (PP) presentation about laser treatments. “That was really great!”. In the presentation she showed what she would look like after a treatment. “The class then knew in advance what to expect. Before this presentation, some of the children were mean and pointed at me. But that stopped after the PP and they even started approaching me”.

Positive reactions

Another youngster has good experience during sports class. “With a laser treatment, you are not allowed to exercise and sometimes you have to get an ice pack for the swelling, so there is an opportunity to talk about it during sports class”. The other one experienced this during mentoring. Another youngster had good experiences in the Visual Arts class. It’s really nice to be “seen”. For example, a teacher just asking ‘are you okay?’ when you have a swollen face after a laser treatment.

Gaining confidence

Classmates can give you more self-confidence. “I had a friend who made me more confident. She stood up for me when someone said something unkind. She had quite a big mouth and the others would quickly shut-up.” Another one used school camp of the first grade to talk about it. After that, it was quite normal for everyone. “When I gave a talk about my port-wine stain in primary school, I always got a ten. At a certain point, I realized that. Because they thought I was so brave or they felt sorry for me.”

Experiences with teachers

There are also bad experiences with teachers. “The one who totally ignores it, even if you come into the classroom with a red face after laser treatment. Then the taboo that it’s so bad and that you don’t talk about it is confirmed”.

“And another teacher reacted with “oh well, I had a lot of pimples at your age”. That’s meant kindly, but then you really don’t get it, that’s something completely different. A remark like ‘beauty is inside’ is not nice either. Once, someone said ‘I think it’s clever brave that you walk around like that’. As if I have a choice!”. There are also teachers who downplay it. “A teacher once said about experiences of young people with a port-wine stain in high school: children in Africa have sometimes lost a leg, that’s even worse”.

Experiences with fellow students

Even classmates do not always react kindly. “That you are bullied or they ask ‘what’s wrong with your head?’ ‘will that go away?’ “One girl with a port-wine stain explained that she switched schools because she was bullied too much. The transition from primary school (which was a nice, small and safe school) to a large high school with many levels was too big. Now she is in a smaller secondary school and is doing much better. About the bullying, the youngster says: “In high school it is really very different than in primary school. In primary school, teachers intervene more quickly if you are bullied. In high school, they say ‘solve it yourself'”, even when I ask for help.

Dealing with it

It is handled differently in the group. One youngster says: “If anyone stares at me, I cheerfully say ‘Hi’ and look directly at them. “On holiday, a child once said to me ‘you were born wrong’. That really upset me. Fortunately, no one had ever said anything like that to me at school. Another young person says that she finds a lot of comfort in music. “Especially music that tells you to be yourself and that it doesn’t matter what other people think of you”. Another has good experiences with falling in love. “If someone really likes you or is even in love with you, they really look through the marks.

Make-up

Sometimes classmates ask: ‘why don’t you put make-up on that? One of the youngsters is very firm on this: “I don’t put make-up on it because it belongs to me”. Other youngsters have tried different types of make-up. “It’s too much work for me”. “When I did it once, they said to me ‘that’s not necessary, is it?’ “. Another one says she has to use a lot to see an effect. “But the difference between wearing make-up or not is too big. Once you start using it, you have to keep using it. Then everyone knows you that way.”

What to do next

Together with the co-creation workgroup, the teaching material for the toolbox is being further developed. It will also contain three examples of a teacher, school or pupil, to give a good example of how to deal with a pupil with a port-wine stain. We are very happy with the experiences that have been shared with us so that we can really make the toolbox from and for the youngsters.

Cecilia Kalsbeek, projectleader toolbox Young people in the picture

With thanks to the Dutch Association for people with a port-wine stain or Sturge-Weber Syndrome (Nv WSWs) and Curias.

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