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.
Caters News Agency Ellahe Haghani was born with Sturge-Weber syndrome
Caters News Agency It left her with a huge port wine stain across the right-hand 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.
Caters News Agency When she was younger, she flew to Edinburgh for a course of laser therapy
Caters News Agency But it didn’t work and she had to put up with cruel comments from strangers
Caters News Agency But then, in 2009, she discovered a doctor in New York
“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.”
Caters News Agency ‘“Some thought I had a contagious disease, others thought I suffered from an acid attack or that I was burned’
Caters News Agency They have cut away at the mass and performed over 20 ops to reduce the risk of regrowth
Caters News Agency She says that she forgets now how deformed she used to be
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.
Caters News Agency
Caters News Agency She now entertains hopes of starting a career within medicine
Caters News Agency And she’s open to dating and starting a family soon
“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.
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.
Caters News Agency Which is something that she’d have never considered prior to having surgery
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.
BODY SHOCK DEATH Footballer dies of cardiac arrest after drinking cold water after a match ExclusiveSTAR’S PLIGHT Fernando Ricksen on oxygen and down to 6st as he fights motor neurone disease Top PicksSTOP MILKING IT Go dairy-free with these great, tasty vegan alternatives to milk and cheese ExclusiveSWEET LITTLE LIES The ‘natural’ foods that are misleading you and can damage your health BABY STEPS How a pioneering healthy eating course is helping kids in Leeds beat obesity PESTER POWER FAILURE Teaching parents to say ‘no’ to their kids reverses child obesity DIET BLOG BLAGS Most weight loss blogs by influencers give BAD advice, experts warn WarningEATEN ALIVE Homeless man’s brain ‘hanging out’ after 4,000 maggots ate away at his head NUT HELPFUL Treating childhood peanut allergy by ‘increasing tolerance’ may make it worse WARNING SIGN I had an itch in my leg for 3 years only to learn it was stage 4 cancer VACCINE PANIC Fears of measles ‘timebomb’ as 500k kids miss MMR jabs after scare stories HEART OP RELIEF Self-charging pacemaker could end misery of repeated surgery for thousands
“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.”
We pay for your stories! Do you have a story for The Sun Online news team? Email us at email@example.com or call 0207 782 4368. You can WhatsApp us on 07810 791 502. We pay for videos too. Click here to upload yours