Advertisement
Home News 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.
Woman with 'saggy skin condition' becomes body positive model
0 seconds of 26 secondsVolume 0%
Press shift question mark to access a list of keyboard shortcuts
00:00
00:26
00:26
 

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

I sat in the doctorโ€™s waiting room shaking with nerves.

Advertisement

At 14 years old, Iโ€™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.

โ€œI should warn you, there are no guarantees,โ€ 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.

Advertisement

As I grew older, it grew too, spreading and growing thicker, like a tumour.

Not surprisingly, this made me an easy target for bullies.

โ€œQuick, run, sheโ€™s coming!โ€ 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.

Advertisement

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)
Advertisement

Cooking and baking became my saviour: I loved making cakes and pastries, though that didnโ€™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 couldnโ€™t be treated surgically or medically for fear that once they cut in to the birthmark, it wouldnโ€™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.

Advertisement

Sadly, it wasnโ€™t.

โ€œIโ€™m sorry,โ€ the doctor said, โ€œBut your birthmark isnโ€™t responding to the way weโ€™d hoped.โ€

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.

Advertisement

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.

โ€œI donโ€™t even recognise myself anymore,โ€ I sobbed to my mum, Zahra.

โ€œWe will find a way to fix this,โ€ she vowed, wrapping me in a hug.

Advertisement

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.

Advertisement

โ€œLook at that monster,โ€ theyโ€™d taunt.

โ€œYou shouldnโ€™t come outside looking like that,โ€ one man jeered.

Others gossiped that Iโ€™d been involved in an acid attack or suffered burns in a fire.

It made me so upset that these people who didnโ€™t even know me could talk about someone this way.

Advertisement

My self-confidence took a real battering and I wondered how I could go on.

Apart from close friends and family, I didnโ€™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)
Advertisement

It would cost a lot, but I found people willing to sponsor me, and Iโ€™d saved like crazy.

Iโ€™d fly to New York while Mum stayed home to look after the rest of the family.

Once again, the doctor warned that it wouldnโ€™t be an easy process.

โ€œItโ€™s going to require a lot of operations, but weโ€™ll get there,โ€ he said.

Advertisement

I wasnโ€™t bothered โ€“ so long as there was an end in sight, Iโ€™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.

Advertisement

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.

Advertisement

Mum flew over to be with me and cried tears of joys when she saw the radical transformation.

โ€œThis is a miracle,โ€ she gasped.

Iโ€™m still in the US and have recently undergone more laser treatment โ€“ itโ€™s going to be a long process but Iโ€™m so thrilled at how far Iโ€™ve come.

I have a picture of myself from before the surgeries that I keep by my bedside.

Advertisement

Each morning, when I wake, I look at the photo in amazement.

Itโ€™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.

Advertisement

Iโ€™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.

Theyโ€™ve made me the strong person I am, and Iโ€™m ready to start the exciting next chapter of my life.

The Boy Whose Skin Grows Too Fast
0 seconds of 40 secondsVolume 0%
Press shift question mark to access a list of keyboard shortcuts
00:00
00:40
00:40
 
Advertisement

Related stories


Advertisement
Advertisement