By Josh Saunders
A nursing student with a deadly birthmark that was confused for an acid attack defies the bullies who think she is contagious and should never go outside.
Ellahe Haghani, 37, from Brooklyn, New York, contends with Sturge-Weber Syndrome, which deformed the right side of her face and left her blind in one eye.
For years, doctors were scared to operate on her large facial birthmark, fearing that a cut could kill her due to them being unable to stem the bleeding.
As the reddish-purple mark continued to grow to the point where her eyes, lips and cheeks were severely swollen, as well as her symptoms and social stigma worsening.
Strangers feared being close to her believing she was infectious, with some thinking she was an ‘acid attack’ or ‘burn’ survivor.
But in 2009, Ellahe flew from her home in Mashhad, Iran, to start treatments with Dr. Milton Waner, who specialises in facial surgeries.
She underwent years of complex debulking to remove some of the mass, laser treatment to reduce the risk of regrowth and reconstruction with skin grafts.
Now after more than 20 surgeries, most recently undergoing laser treatment nine-months-ago, she finally has more confidence in her appearance and is rebuilding her life.
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.
“But when I was outside the house people were frightened, they didn’t know what it was and were scared.
“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.
“Miraculously I found a surgeon in New York, willing to operate on my face, so I came here alone and had up to 20 surgeries.
“Dr. Milton Waner debulked all the extra tissue on my face and at the same time used the laser treatment to lighten the colour.
“Then I had skin-grafts on my check, my nose and then more on my eyelids to make my face look more natural.
“Now I realise how horribly disfigured I 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 lifechanging.
“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.
I went to nursing school, because I wanted to help others who are suffering; helping people makes me happy.”
In her home country or Iran, Ellahe had all but given-up hope on treatment after being refused surgery, only to watch her birthmark grow in-size and darken in colour.
At the age of 14, she flew to Edinburgh, Scotland, for two-years of laser treatment which unfortunately didn’t help.
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.”
But since receiving surgery in New York, from 2009 to the present day, she feels more determined than ever to achieve her dreams of working in medicine.
To prevent the birthmark from re-growing, she still receives laser treatment.
Ellahe said: “I cannot even believe that was me, but back then I was so used to my face that I couldn’t see how severe it was.
“I’m so grateful to Dr. Waner and everyone who helped me, it was a lifechanging experience and I owe my new life to the people who helped me.
“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.”
Ellahe’s birthmark is still visible on her nose and forehead, she also struggles with headaches from Sturge-Weber Syndrome – as well as losing sight in her right eye due to glaucoma.
But with a new-found confidence and self-assurance, she’s hoping to move on with the rest of her life, getting married and having kids.
Previously believing her facial difference prevented her in the past.
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.
“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.”
For more information or to donate visit the Vascular Birthmark Foundation’s website: www.birthmark.org/donate