14-year-old Esmee was born with a fairly common strawberry birthmark on her face.
Doctors soon discovered, however, that the mark was a symptom of arteriovenous malformation (AVM) – an abnormal connection between arteries and veins.
The pressure on some of her veins has caused them to swell into varicose veins.
That’s happened in Esmee’s face, and as she’s grown older, a benign tumour has grown over her chin, mouth and nose.
Despite her condition, Esmee – who recently appeared on Dutch TV to talk about her condition – enjoys doing the kinds of things other teenage girls love. She’s a keen horse rider and she loves socialising with her mates.
Esmee said: “I want people to know about it. I’m just a normal 14-year-old girl who does things like anyone else.”
At school, the main difference is that Esmee gets to leave class five minutes early to avoid anyone bumping into her.
Due to her tumour’s soft tissue, the exposed veins could bleed profusely if she accidentally hit her face.
Her mum, Miranda, says that Esmee is free to go shopping with her pals in the city centre, but she makes sure that she’s never more than five minutes away in case of an emergency.
What is arteriovenous malformation?
An arteriovenous malformation (AVM) is an abnormal tangle of blood vessels connecting arteries and veins.
That disrupts the normal blood flow and oxygen circulation.
It’s almost always present at birth (and occurs early on in pregnancy) although they don’t tend to be obvious right away.
AVM occurs in around 1.4 in every 100,000 people.
Symptoms include:
- blue, purple, red discolouration
- swelling
- warm skin with a pulse or buzz
- ulcered skin
- tumours which grow during childhood and teenage years
Small AVMs can be removed but often, they’re in very delicate areas and that means that it’d be dangerous to operate.
The tumour hasn’t grown over Esmee’s eyes but she only has 40 per cent vision in her best eye.
She also uses a straw if she wants a drink – despite being able to eat normally.
Every month, Esmee needs to visit the hospital for an embolisation, a procedure that blocks abnormal blood vessels to prevent the tumour from growing.
She entertains plans to someday work with animals.
Esmee said: “Something with children would be difficult, as they might get scared and do not know what to do.”
She even said that many adults treat her differently because of her condition.
During her appearance on national TV, Esmee was praised for her bravery and positive outlook on life, with one viewer writing: “A young girl in the prime of her life. It is beautiful to see her standing up for herself. Respect, Esmee!”
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