By Rafaela Kuznec @RafaelaKuznec
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Videographer / director: Hans Peter Schepp
Producer: Rafaela Kuznec, Ruby Coote
Editor: Beth Angus
Tessa Schiethart, 25, from Amsterdam, The Netherlands, was born with the Sturge-Weber Syndrome that resulted in a port-wine stain on her face and increased pressure in the eye.
Sturge-Weber Syndrome affects the development of certain blood vessels causing abnormalities in the brain, a red or pink birthmark referred to a port-wine stain, and/or increased pressure in the eye (glaucoma).
In Tessa’s case, the Sturge-Weber Syndrome caused her a port wine stain and eye complexities.
Tessa told Barcroft TV: “The eye disease causes for my right eye to be blind and my left eye is under constant supervision of a medical doctor which is quite stable now.”
Sturge-Weber Syndrome is estimated to affect 1 in 20,000 to 50,000 individuals in the world.
Despite her condition, the 25-year-old refuses to cover her birthmark with make-up and embraces her differences.
Tessa said: “I chose not to spent two hours of my morning in front of a mirror putting on a mask of chemical make-up to cover my stain so that ‘society’ would accept me and I would fit some ‘standard of normalcy’.
“I did try it, twice, but I didn’t recognize myself at all without my stain, and that was such a weird distorted feeling.”
When Tessa was three years old the doctors advised her parents to get a laser treatment in order to lighten Tessa’s birthmark.
However, the treatment went wrong and caused scars on Tessa’s face.
Tessa said: “When I was six we stopped laser treatment because my eyes became more important and there was high eye pressure and we needed to lower it in order to keep my left eye from becoming blind as well.
“Losing sight has always been my biggest fear.
“I am super happy to be able to see, to travel and see different places, to watch movies and read books.”
Tessa is studying Organisational Science, and currently working on research on how people with a different look are affected by job interview processes and how they experience the job market.
Tessa’s mother, Mariette Schiethart, told Barcroft TV that when Tessa was born her main concern was how her daughter’s condition will impact her social life.
But Marriette admitted that Tessa copes with her condition very well and added: “She doesn’t want to use make-up to cover her birthmark.
“I think she is very open about it and she accepts the birthmark as it is.
“I am proud of it.
“I think she does a good job.”
Tessa’s friend, Rosalie Thoden van Velzen, said that Tessa is an inspiration to her.
She said: “Tessa wants to bring something into the world where people can learn how to cope with facial difference.”
Tessa’s goal is to spread awareness of visible difference by sharing her own story of living with a facial birthmark.
Her campaign ‘To Face The World’ is aimed at promoting a difference in society and organisations, to inspire others to be themselves, and to change our societal view on diversity.
Tessa said: “I think that we should follow our dreams and of course you will be hindered by certain things in life.
“I think there will be obstacles but you shouldn’t lose your dreams because of that, it is important to follow your dreams and live the life to the fullest.
“We live in a world where we identify too much with our bodies.
“I think we judge outside appearance too much and there is a sense of ‘normal’ that just are not real.”
She added: “The term normal is so overrated, there is no normal we are all different and some of us look a bit more different on the outside.”