Student who lost 3 pints of blood a day from her GUMS due to Arteriovenous Malformations

tunisante August 1, 2016 Health

Nikki Lulildia was diagnosed by doctors with Arteriovenous Malformations
Rare but deadly condition causes blood vessels in the face to tangle
She was rushed to hospital after she lost blood from her gums each day
But pioneering new surgery meant she hasn’t suffered any bleeds since

Stephen Matthews For Mailonline

Published:
05:12 EST, 1 August 2016

|
Updated:
08:58 EST, 1 August 2016

View
comments

A student whose face was ravaged by a rare condition has had a lifesaving operation after losing up to three pints of blood per day.

Nikki Lulildia, 20, from Coventry, was diagnosed with facial Arteriovenous Malformations (AVM) shortly after she turned 11.

The rare but life-threatening condition causes the blood vessels to become tangled in the face, disrupting natural blood flow.

Student Nikki Lulildia, 20, from Coventry, was diagnosed with facial Arteriovenous Malformations (AVM) shortly after she turned 11. The rare but life threatening condition causes the blood vessels to become tangled in the face, disrupting natural blood flow

Her condition left her in debilitating pain, and her AVM grew as she became older. She needed five blood transfusions in a bid to survive but baffled doctors spent five weeks testing and scanning her face before she was finally diagnosed, pictured before treatment

It all started with bleeding gums, but when she began to lose a significant amount of blood each day, her family rushed her to hospital.

When she was first diagnosed her prognosis was bleak, with doctors not knowing how to control the bleeds, and her life hung in balance.

And her condition left her in debilitating pain, as her AVM grew in size when she became older.

But after eight hours in a pioneering new surgery, her blood vessels were successfully blocked off and she hasn’t suffered any bleeds since.

Toddler hospitalised with ‘worst chickenpox ever seen’ after…

Boy, 3, left ‘looking like a burns victim’ after suffering…

Is WHEAT the reason you feel bloated and tired? Tennis ace…

March of the male mums: Sex-change men to give birth on…

Miss Lulildia said: ‘At time I thought I was dying – AVMs can cause heart failure and in my case, I could’ve easily of bled to death.

‘I was terrified but because I was so young, I had very little understanding of my condition when I was finally diagnosed.

‘I spent months in pain and doctors thought I was a walking miracle I was still alive as my AVM was so severe.

‘At my worst, I was losing up to three pints of blood per day – it was embarrassing as it would happen suddenly and there was no way to control it.

‘I remember needing blood transfusions and spending days hooked up to machines so I didn’t pass out from blood loss.

‘My operations have left me with some nerve damage but I’m thankful to be alive.’

She became the first UK patient to undergo a new pioneering operation called Onyx Embolization at Birmingham Children’s Hospital. After eight hours in surgery, her blood vessels were successfully blocked off and she hasn’t suffered any bleeds since

Miss Lulildia had some teeth removed in a bid to control the condition and is now calling for other AVM sufferers to go public to raise awareness, pictured after treatment

She needed five blood transfusions in a bid to survive but baffled doctors spent five weeks testing and scanning her face before she was finally diagnosed.

AVM – WHAT IS IT AND HOW DOES IT CAUSE SUCH DAMAGE?

An arteriovenous malformation (AVM) is a specific term used to describe a tangle of blood vessels with abnormal connections between arteries and veins.

High pressure arteries containing fast flowing blood are directly connected to low pressure veins, which normally only contain slow flowing blood.

This means that blood from the arteries drains directly into the veins – without stopping to supply the normal tissues in that part of the body with essential substances like oxygen and nutrition.

Over time this can lead to the normal tissues becoming painful or fragile.

It also means that the AVM gets progressively larger over time as the amount of blood flowing through it increases, and it can cause problems due to its size.

Finally, it may also mean that the heart has to work harder to keep up with the extra blood flow.

Some doctors describe an AVM as ‘a ring road that bypasses the high street of a town’.

Traffic (or blood) will use the bypass rather than the high street which suffers as a result.

AVMs are thought to affect approximately 1.4 in every 100,000 people.

Source: Great Ormond Street Hospital

Miss Lulildia also had several teeth removed in a bid to control her facial AVM.

She became the first UK patient to undergo a new operation called Onyx Embolization at Birmingham Children’s Hospital.

AVM’s cause the blood vessels, arteries and veins to tangle.

They can occur anywhere in the body and rupture at any time, making them extremely dangerous especially in the brain where they cannot be seen.

But now the aspiring nurse is calling for other sufferers to share their stories in order to raise awareness for facial AVMs.

She said: ‘I had to miss a lot of school because of hospital appointments and operations but I’m going back to college this September so I can study paediatrics at university.

‘Onyx Embolization surgery has literally saved my life and I’m so happy I’ve been able to secure a place at college so I can continue with building my future.

‘My AVM is going up the left side of my cheek after starting near my mouth but at the moment my symptoms aren’t too bad.

‘Growing up feeling and looking different can be emotionally draining but I have learnt to ignore any negative remarks and stares.

‘I want other young people with AVMs to speak up about it, as it can be so isolating when you feel like you’re the only person with the condition.’

Miss Lulildia has been supported throughout her treatment by The Butterfly AVM Charity, who specialise in helping sufferers.

When she was first diagnosed her prognosis was bleak, with doctors not knowing how to control the bleeds, and her life hung in the balance

Miss Lulildia had to miss a lot of school because of hospital appointments and operations but now she is going back to college this September so she can study paediatrics at university

George Christou, director of The Butterfly AVM Charity, said: ‘I have been astounded by Nikki’s bravery in dealing with the everyday uncertainty having an AVM can give a sufferer.

‘The constant fear of having a large bleed controls every aspect of a person’s life but despite this Nikki has coped admirably and is an inspiration to sufferers in the UK and around the world.

‘The Butterfly AVM Charity was founded in order to raise much needed funds for specific research into peripheral, brain extremity AVMs with the aim to improve treatments and find a cure.

‘We want raise awareness about AVM’s by highlighting stories of sufferers and a lack of definitive treatments and to offer support for AVM sufferers and their families.

‘Also to inform those with AVM about new treatments and establish a comprehensive list of treatment centres, specialist interventional radiologists, surgeons doctors.’

For more information visit www.butterflyavmcharity.org.uk.