A woman is hoping to inspire people to embrace their differences after doctors scarred her face while attempting to reduce her birthmark.
Tessa Schiethart, 26, was born with a vascular condition known as Sturge-Weber syndrome (SWS), a rare disorder that affects the eyes and brain, and is usually associated with a large birthmark that extends across the forehead or scalp.
While the disorder did not affect Tessa’s brain, she has the telltale birthmark, which covers much of her face, while she is also blind in her right eye and has around 80% vision in her left. Her remaining eyesight is currently ‘stable’, though doctors have warned her vision is not guaranteed and she may one day be blind in both eyes.
When Tessa was born, doctors did not know enough about SWS to operate on her eyes and attempt to save her vision. However, her parents were encouraged to treat their newborn daughter’s birthmarks with lasers while she was very young, as infants’ skin is thought to be more tolerant to such procedures.
The young girl began having regular laser treatment to ‘lighten’ her birthmark when she was six months old, but when she turned two the hospital used a new laser to perform the latest round of medical procedure.
However, the new machine was calibrated at a much higher level than expected, and Tessa was left with burns around her nose and above her left eye, leaving visible scarring across her face.
The 26-year-old explained it was the battle to save her vision, rather than the birthmark, that had a bearing on her childhood and, as her vision is not guaranteed, Tessa said it is much more important for her to ‘see the world rather than spending [her] time ‘camouflaging’ [her] face for the sake of being seen differently in society’.
She embraced her condition as part of her identity, and playfully suggests her ‘birthmark trademark’ ensures she ‘never has to introduce herself twice’.
Tessa, from Amsterdam, is now is a life coach who helps people to live their life to the fullest.
The scars belong to me as much as my birthmark does.
Now, I invest time each day on my internal being, which helps me keep a healthy relationship with my exterior. I have always been interested in how people see and are seen in society, so I focused my research at university on this subject.
Last year I conducted research on the experience of people with visible differences with stigma and discrimination, which is a very personal subject to me. It has been quite a journey meeting and speaking to special people with a variety of faces and it definitely played a part in my own journey and relationship with my birthmark.
I believe in education and letting the world see and engage in diversity in all its forms and facets. In the future I hope to continue with this research and promote equal treatment and full acceptance of different facial and bodily looks in society.
Tessa uses her skills to talk to people who may feel overwhelmed by their own differences, to help them embrace what sets them apart from ‘the norm’, with a goal of spreading awareness of visible differences.
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.
The more people talk, the less barriers there are. People often say that the Netherlands is a very tolerant country – and that’s true. But tolerance without engagement means nothing, and unless we learn to speak and ask questions respectfully nothing will change.
Tessa went on to offer advice to parents whose children may have birthmarks, encouraging them to ‘make sure [their children] have a voice as soon as possible.’
Let them answer when people enquire about their appearance in their own way. If you speak over their head or encourage them to shy away from who they are, it can have devastating effects on their self-esteem which can make for a very difficult life journey.
Give them a big mouth like I have, and they’ll never let anything hold them back. They’ll be prepared to handle abuse if and when it happens.
The life coach also advised those living with visible differences, or those struggling in general, to surround themselves with positive people and seek guidance and help wherever possible.
Know that there are people out there who are waiting to help you and who will love you for who you are.
If you want to wear no make up one day and then camouflage yourself the next, that’s perfectly fine. Don’t be too hard on yourself. One step at a time is all it takes.
I know as well as anyone that it can be a burden to always be looked at – and it can feel like that a lot – but you are you – uniquely you – and that should be celebrated.
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2019 . .• It was a weird year. I started off the year with my research for my master thesis on #visibledifference, it was the year where @tofacetheworld grew so much and became so much a part of my life. Gained my MSc with it, interviewed amazing people, did many photoshoots, spoke about my research at 2 conferences, was featured in 3 magazines, got reposted by Hollywood-peeps. Made some beautiful connections through it. All so special. With @tofacetheworld I want to be more of service for those with body-related questions and issues in the new year and in 2020 I will open my coaching practice. Personally, it was a tough year I feel. My research was personally very confronting, but has transformed me so much. Started of the year with a big hip injury which took me months to heal from. Some old philosophies say we store emotions in the hips, so no wonder when I researched personal territory, the body reacted too. Changed my way of practicing this yoga and let a dear teacher go with it. New teachers inspired me beyond expectation. In all this I was so beautifully supported by friends close-by and far away, new ones and those I have known for more than this decade that we are ending. Went to Lebanon, Oxford, Copenhagen, Marrakech, Spain, London and at the end, Mysore, India, which was definitely the best thing of this year :) Lost some love of friends and relationships, but definitely gained a ton more. ❤️ 2019 has been a transformative one. And hopefully the fruits of that transformation will grow in 2020. Thanks for all your support online, and offline 🙏🏻 It means the world to me, to share this journey @tofacetheworld 🙏🏻 • Love, Tessa . . #topnine #2019 #decade #endofanera #newyear #transformation #tofacetheworld #birthmarked #birthmarks #sturgewebersyndrome #reflection #yearend #2020 #facetheworld #markedbyaburningflame #marked #scars #glaucoma #visibledifference #faceequality #ableism #lookism #stigma #love #respect #yoga #ashtanga
Tessa has a ‘never say never’ approach to the concept of ‘correcting’ her birthmark, though her experience as a child has left her hesitant. For now, she is happy to continue her research and help people ‘find their happiness’.
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Emily Brown first began delivering important news stories aged just 13, when she launched her career with a paper round. She graduated with a BA Hons in English Language in the Media from Lancaster University, and went on to become a freelance writer and blogger. Emily contributed to The Sunday Times Travel Magazine and Student Problems before becoming a journalist at UNILAD, where she works on breaking news as well as longer form features.