Amba Smith is covered in red patches from head to toe.
The 17-year-old was born with cutis marmorata telangiectatica congenita (CMTC) – a birthmark that affects her blood vessels causing a net-like pattern on her skin and giving it a marbled appearance – as well as a port wine stain birthmark on her face, caused by Sturge-Weber Syndrome.
Her condition also means she has internal birthmarks covering her organs.
When Amba was little her parents Kelly Smith, 43, and Scott Smith, 40, faced hurtful comments from strangers accusing them of scalding their daughter in the bath or letting her get sunburnt.
She was also bullied at school by kids who would ask her if she’d been in a fire.
The comments shattered her confidence and made her very frustrated about her condition, so she would cover the marks with makeup.
But now she wants to share pictures of herself without makeup to raise awareness of the condition.
Amba, of Lincoln, Lincolnshire, said: ‘I was in Year 3 when the bullying started. I still remember it so clearly now.
‘People would say stuff about my skin and ask if I was in a fire or why my parents let me get sunburnt. Some people would even ask if my parents scalded me in the bath.
‘My condition would cause my stomach to bloat when I was younger so other kids would call me fat even at the age of eight.
‘When I was young, I couldn’t understand. I thought my skin was just normal and there were lots of other people out there like me. I thought I was just the only one at my school.
‘But as I got older and learnt more about my condition I realised it was really rare. We go to lots of meet-ups at hospitals and I’ve never seen anyone else with a birthmark like me.
‘Usually Sturge-Weber only affects one side of your body but my whole body is covered from head to toe.
‘Then I would get frustrated because I didn’t understand why this happened to me.’
After joining secondary school, Amba’s confidence started to grow as she found it easier to make friends and began experimenting with makeup to cover her birthmark on her face.
But in Year 9, she was hospitalised for eight months because of health problems caused by the lesions inside her body.
When she got back to school, she says her friends had turned against her and she was accused of faking her illness for attention.
Amba said: ‘All I wanted was to be back out there living a normal everyday life. There were times I resented my birthmark for taking all of that away from me.
‘That’s when the bullying started again and my confidence levels dropped to absolutely nothing and I started suffering from anxiety.’
The bullying got so severe, Amba was moved to a hospital school to complete her GCSEs.
What is Cutis marmorata telangiectatica congenita?
Cutis marmorata telangiectatica congenita (CMTC) is a birthmark that affects the blood vessels in the skin causing a net-like pattern on the skin giving a ‘marbled’ appearance.
We do not fully understand what causes CMTC. It probably develops early in fetal life when the blood vessels are forming. It is not passed on from parent to child. It is unlikely to have been caused by anything that happened during pregnancy. It is a rare condition.
The main feature of CMTC is the net-like pattern on the skin, which gives a marbled appearance. This pattern ranges in colour from blue to purple and may become more visible in extremes of temperature.
The pattern may affect one area of the body – most commonly a leg, but sometimes also the arms and trunk. The pattern rarely affects the face and scalp.
Great Ormond Street Hospital
Despite being hospitalised again in May 2018 and having to take her exams from her hospital bed, Amba managed to pass three GCSEs and two BTECs to secure a place at college.
Amba is now doing a Level 2 beauty therapy course and hopes to go onto study to be a makeup artist in London later this year.
Since starting the course, Amba has made so many new friends who are completely accepting of her birthmark and tell her how beautiful she is with and without makeup.
Being surrounded by such a supportive group has seen Amba’s confidence bloom and for the first time in her life, she feels happy to show off her birthmark.
Amba said: ‘Before I started college, I was in bad shape.
What is Sturge-Weber syndrome?
Sturge-Weber syndrome (SWS) is a condition affecting the skin, brain and eyes. It is named after the doctors who described it in the late 19th century and early 20th century.
A port wine stain is a vascular birthmark caused by abnormal development of blood vessels in the skin. It can occur anywhere on the body, but in SWS it affects the skin around the forehead and/or scalp.
As well as the port wine stain affecting the skin, it will also involve an extra layer of blood vessels over the surface of the brain (angioma).
We do not know how many people are diagnosed with SWS but we know it is a rare disorder.
Great Ormond Street Hospital
‘But college has helped my confidence so much. Everyone is so lovely and accepting.
‘We had a day where we were all supposed to get facials and I was scared to take my makeup off in front of everyone but my tutor explained that I had a birthmark.
‘When I took my makeup off, everyone came up to me to tell me how beautiful I am without my makeup on. It made me so happy.
‘Since that day, I’ve been going out more and more without my makeup on. I’m a lot more confident just being me.
‘Makeup at first was my coping strategy and a way of hiding my birthmark and changing myself but now I see it as a form of art and a way of showing people what I can do.
‘I’ve even started incorporating my birthmark into my makeup looks like putting a love heart around it. I’m starting to feel quite proud of being so unique.
‘I want to encourage more people to be themselves. If you want to wear makeup then go for it but if someone doesn’t like you for you, with and without makeup, then they’re not worth your time.’
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