Real Life

Real life: How Sturge Weber Syndrome took over my face

I was being held prisoner by my own body but I refused to give up.

By As told to Take 5

Ellahe Heghani, 37, shares her painful true life story;

I sat in the doctor's waiting room shaking with nerves.
At 14 years old, I'd flown with Mum overseas to see a specialist who we hoped could use laser treatment to clear the hideous purple birthmark that covered the right side of my face.
"I should warn you, there are no guarantees," the doctor began.
But we knew there was no other choice.
I was born with the birthmark on my face, which was later diagnosed at Sturge-Weber Syndrome, a condition caused from abnormal blood vessels on the surface of the brain.
As I grew older, it grew too, spreading and growing thicker, like a tumour.
Not surprisingly, this made me an easy target for bullies.
"Quick, run, she's coming!" the other kids laughed when I walked through the school gates.
None of them came anywhere near me, fearing that I was contagious. The last thing they wanted was to end up looking like me.
But their cruel words left me in tears.
I tried to cover my face, ashamed of who I was.
My family knew how devastating this was for me.
I was born with a birthmark that covered part of my face. (Image: Supplied)
Cooking and baking became my saviour: I loved making cakes and pastries, though that didn't keep my frustrations away completely.
Over the years, Mum took me to countless doctors searching for a cure.
They all told us the same thing: the lesions couldn't be treated surgically or medically for fear that once they cut in to the birthmark, it wouldn't stop bleeding and I might die.
So when we found the specialist overseas who agreed to try laser treatment, I hoped it would be end of my ordeal.
Sadly, it wasn't.
"I'm sorry," the doctor said, "But your birthmark isn't responding to the way we'd hoped."
My stomach sunk as I tried to accept that there really was nothing else I could do.
The reddish-purple mark was now destroying my face as it continued to grow and darken in colour.
As years passed I made some close friends but, my eyes, lips and cheeks grew swollen and drooped down with the weight of the enormous birthmark.
Looking in the mirror was daunting.
"I don't even recognise myself anymore," I sobbed to my mum, Zahra.
"We will find a way to fix this," she vowed, wrapping me in a hug.
Me when I was 16 years old. (Image: Supplied)
At age 20, I was studying at university and the birthmark was so large that it covered my right eye completely and I lost all vision.
If going to school as a kid had been hard, life as an adult was just as difficult.
Strangers were brutal.
"Look at that monster," they'd taunt.
"You shouldn't come outside looking like that," one man jeered.
Others gossiped that I'd been involved in an acid attack or suffered burns in a fire.
It made me so upset that these people who didn't even know me could talk about someone this way.
My self-confidence took a real battering and I wondered how I could go on.
Apart from close friends and family, I didn't want anyone to see me and barely left the house.
But at my lowest point, I started researching surgeons all over the world and finally found one in the United States who was willing to operate.
Recovering in hospital. (Image: Supplied)
It would cost a lot, but I found people willing to sponsor me, and I'd saved like crazy.
I'd fly to New York while Mum stayed home to look after the rest of the family.
Once again, the doctor warned that it wouldn't be an easy process.
"It's going to require a lot of operations, but we'll get there," he said.
I wasn't bothered – so long as there was an end in sight, I'd put up with the pain.
I was devastated when the first skin grafts failed. (Image: Supplied)
To begin with, surgeons had to de-bulk all the extra tissue that had built up around my face, followed by advanced laser treatment to lighten the colour.
I had complete faith in the surgeon and was pleased to learn the first operation had been a success.
After that I had skin-grafts on my cheek, nose and eyelids to make my face appear more natural.
I also needed tissue expanders in my neck to create more skin. It was uncomfortable but I told myself it was all for the greater good.
Before my surgery with expanders in my skin. (Image: Supplied)
It took 20 surgeries all up and back-and-forth hospital visits but, gradually, I watched the birthmark recede.
Mum flew over to be with me and cried tears of joys when she saw the radical transformation.
"This is a miracle," she gasped.
I'm still in the US and have recently undergone more laser treatment – it's going to be a long process but I'm so thrilled at how far I've come.
I have a picture of myself from before the surgeries that I keep by my bedside.
Each morning, when I wake, I look at the photo in amazement.
It's so surreal to see an image of someone who is both me and a stranger.
Me today. (Image: Supplied)
I do still struggle with headaches and have not regained the sight in my right eye, but I feel like my life is finally back on track.
I've never been in love before and hope to one day find the man of my dreams so we can start a family.
For the first time in my life, I feel beautiful, even if I have scars across my face.
They've made me the strong person I am, and I'm ready to start the exciting next chapter of my life.

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