Woman’s birthmark causes her to be confused for an ACID-ATTACK victim
Student, 37, whose port wine stain causes her to be confused for an ACID-ATTACK victim hopes to settle down after ‘life-changing’ surgery
- Ellahe Haghani has Sturge-Weber syndrome- it causes abnormal blood vessels
- Medics in her native Iran refused to operate over fears she would ‘bleed to death’
- Flew to New York in 2009 for the first of 20 ‘debullking’ surgeries
A student who was born with a port wine stain across her face was often confused for an acid-attack or burns victim before undergoing ‘life-changing’ surgery.
Ellahe Haghani suffers from Sturge-Weber syndrome, which causes abnormal blood vessels to develop in the skin and has left her blind in her right eye.
Doctors in Iran refused to operate on Miss Haghani’s blemish over fears a single ‘scratch’ to the lesion could cause her to ‘bleed to death’.
With the port wine stain swelling to cover her eyes, mouth and cheeks, the now 37-year-old endured years of people cruelly asking if her condition is contagious and even saying she should not be allowed to leave the house.
But things started to look up when Miss Haghani, who is studying to be a nurse, was introduced to a surgeon who believed he could lessen her blemish in 2009.
Miss Haghani flew to New York, where she now lives, for the first of 20 ‘debulking’ surgeries, as well as laser treatments and skin grafts.
Although the blemish is still visible on her nose and forehead, the operations have given Miss Haghani a newfound confidence, with her hoping to settle down and start a family.
Ellahe Haghani was born with a port wine stain across her face and was often confused for an acid-attack victim. She is pictured left after her second or third ‘debulking’ surgery. The now 37-year-old is pictured right at 35. She recently underwent her 20th operation
Doctors in her native Iran refused to operate over fears even a scratch to the birthmark would cause Miss Haghani to ‘bleed to death’. However, in 2009 she was introduced to a doctor in New York who thought he could help. She is pictured aged 28 after her first operation
Speaking of her condition, Miss Haghani said: ‘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 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.’
Miss Haghani was repeatedly refused surgery in Iran, which caused her blemish to become more prominent.
‘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,’ she said.
‘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.’
Desperate, Miss Haghani flew to Edinburgh at just 14 years old to undergo two years of laser treatment, which had little effect.
And as she grew older, Miss Haghani’s blemish continued to become larger and darker.
‘[At] the age of 26 it was so big and disfigured I became scared myself,’ she said.
Miss Haghani has Sturge-Weber Syndrome, which causes abnormal blood vessels to develop in the skin and has left her blind in her right eye. She is pictured in 2009 before surgery
Miss Haghani is pictured left with tissue expanders in her neck to help rebuild her face. Now 37 and living in New York (right), she hopes to settle down and have a family
She is pictured having dead skin removed from her face following one of her skin transplants
Unable to tolerate her appearance much longer, Miss Haghani came across Dr Milton Waner, who specialises in facial surgery.
‘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,’ she said.
‘Dr 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.’
Miss Haghani is thrilled with the results of her treatment, with her most recently undergoing laser therapy nine months ago.
‘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,’ she said.
‘I’m so grateful to Dr Waner and everyone who helped me, it was a life-changing experience and I owe my new life to the people who helped me.
Pictured left aged 20, Miss Haghani endured years of bullying from people who cruelly asked if her condition was ‘contagious’. Pictured right at 16, her birthmark was already growing
Miss Haghani still suffers headaches and glaucoma as a result of Sturge-Weber syndrome but is determined to remain positive and give back.
‘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,’ she said.
‘I went to nursing school, because I wanted to help others who are suffering; helping people makes me happy.’
Miss Haghani even keeps a photograph of herself before her surgeries next to her bed.
‘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,’ she said.
Miss Haghani is pictured at 32 healing after one of her skin grafts. She still has laser surgery to prevent the blemishes reappearing, with her most recent treatment being nine months ago
Miss Haghani’s appearance has given her a newfound confidence. She is pictured recently
With her newfound confidence, Miss Haghani hopes to get married and have children.
‘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,’ she said.
‘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.’
WHAT IS STURGE-WEBER SYNDROME?
Sturge-Weber syndrome is a rare disorder present at birth. It’s characterized by a port-wine stain on the face and brain or eye abnormalities.
While some children don’t have any neurological symptoms of the disorder, others have severe developmental delays and seizures.
The disorder is not believed to be genetically inherited.
The total number of people with Sturge-Weber syndrome is unknown since many never receive a diagnosis. Estimates range between one in 40,000 and one in 400,000.
Signs and symptoms:
- Facial birthmark – port-wine ‘stain’
This is the most apparent indication of the syndrome. It’s present at birth and typically involves at least one upper eyelid and the forehead.
The birthmark, varying from light pink to deep purple, is due to an overabundance of capillaries – the smallest blood vessels in the body – just beneath the skin.
In rare instances, there is an absence of this birthmark.
- Neurological conditions
There is often excessive blood vessel growth on the surface of the brain (angiomas), located in the back region and on the same side as the port wine birthmark.
These angiomas create abnormal conditions for brain function in the region with seizure activity being the most common.
Developmental delay of motor and cognitive skills may also occur to varying degrees.
This increased pressure within the eye is another condition which can be present at birth or develop later.
The incidence of glaucoma in patients with Sturge-Weber is approximately 70 percent.
The glaucoma is usually restricted to the eye which has the stain involvement.
The treatment for Sturge-Weber syndrome depends on the type of symptoms the child may be experiencing. It may consist of medications to treat seizures, surgery to treat eye problems, or therapy to treat developmental delays.
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