Student’s face engulfed by deadly birthmark has 20 operations to rebuild her face after strangers called her contagious
Ellahe Haghani has moved continents to find help for the birthmark that has left her blind in one eye
A BRAVE nursing student is speaking out about living with a deadly birthmark that left her blind in one eye.
Ellahe Haghani, 37, has Sturge-Weber Syndrome, a condition which has deformed the right side of her face.
For years, doctors were too scared to operate - fearing that a cut could kill her if they were unable to stem the bleed.
The port stain mark has continued to grow, causing her eyes, lips and cheeks to swell.
Strangers have been scared to come too close to her in case she's contagious - and some have mistakenly believed her to be a victim of an acid attack.
Ellahe said: “Over the years, the lesion on my face continued to grow, it became dark and very big, until the age of 26 when it was so big and disfigured that I became scared myself.
“It was something I got used to seeing in the mirror every day and eventually felt comfortable around friends and family."
She says that people were "frightened" when they saw her on the street because didn't know what was wrong with her face.
“Some thought I had a contagious disease, others thought I suffered from an acid attack or that I was burned.
“Horrible people told me I shouldn’t come out in public and stay inside, but I didn’t listen to them because it’s my life."
But in 2009, Ellahe few from her home in Iran to start treatment with Dr Milton Waner in New York.
He specialises in facial surgeries and has conducted more than 20 on Ellahe, removing some of the mass and reducing the risk of regrowth.
She's had skin-grafts on her cheek, nose and eyelids to make her face look "more natural" - and which have caused her to realise "how horribly disfigured she was".
"When it’s your own face, you get used to it and don’t see yourself the way other people do - my surgeries have been life-changing.
“I believe in myself, my face doesn’t define me, what defines me is my abilities, what I do with my life and how I help other people."
The surgeries carry an extra significance for Ellahe as she underwent two years of unsuccessful laser treatment in Edinburgh when she was 14.
Ellahe said: “My family searched everywhere for a way to cure me, but nothing was available, all doctors said was that the lesions could not be treated surgically or medically.
“They feared that as soon as they touched my birthmark, that they wouldn’t be able to stop the bleeding.
“Even from a scratch I risked bleeding a lot, doctors were scared to operate in case I died.”
What is Sturge-Weber syndrome?
Sturge-Weber syndrome (SWS) is a rare condition that affects the skin, brain and eyes.
It's characterised by the port wine strain - a birthmark that's caused by the abnormal development of blood vessels in the skin.
It tends to affect 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).
That leads to seizures and learning difficulties.
It's not a genetic condition. It usually starts very early in pregnancy when the baby is developing in the womb.
80 per cent of kids with SWS have epilepsy, while a third will suffer from migraines.
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But since having treatment in NYC in 2009, she's now more determined than ever to achieve her dream of working in medicine.
Ellahe said: “I have a picture of myself from before surgeries in 2009, that I keep right by my bedside.
“Every day I wake up and look at the picture to remember who I was and am now, so I have the courage to do anything I want now.”
Her birthmark is still visible on her nose and forehead, and she also struggles with headaches and blindness in her right eye caused by her condition.
But her surgeries have given her a new found confidence.
In fact, she's now setting her sights on graduation, marriage and hopefully, kids.
Ellahe said: “I was a shy person before, but I still feel like I want to date someone, it has got to be someone who knows you very well and not just for your face.
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“But I’m not giving up, I have lots of good friends, and I’m sure there is someone for me.
“The people who know me, see me for more than my face and as someone who is determined to get whatever she wants.
“I have to prove everybody wrong who says I cannot do things, but as everyone who knows me believes - I am stubborn and never give up.”
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