A young woman who lost three pints of blood every day due to agonising condition has undergone life saving op
A young woman whose face was ravaged by a rare condition has undergone a lifesaving operation after losing up to three pints of blood per day.
Student Nikki Lulildia, 20, from Coventry, West Mids, was diagnosed with facial Arteriovenous Malformations (AVM) – a rare but life threatening condition that causes the blood vessels to become tangled in the face, disrupting natural blood flow – shortly after her 11th birthday.
It all started with bleeding gums but when Nikki started losing up to three pints of blood per day, her family knew it was something far more serious and rushed her to hospital.
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.
Nikki’s condition left her in debilitating pain, and as she became a teenager her AVM grew.
Thankfully, 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, Nikki’s blood vessels were successfully blocked off and she hasn’t suffered any bleeds since.
The aspiring nurse is now sharing her story to help raise awareness for facial AVMs.
Nikki said: “At time I thought I was dying – AVMs can cause heart failure and in my case, I could’ve easily of bleed 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 that I was still alive as my AVM was so severe.
“I needed around five blood transfusions when I was bleeding at my worst.
“It was life changing when I was offered the Onyx Embolization surgery, with the most recent surgery being three years ago, and I haven’t suffered any bleeds since.
“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.
“The bleeding was caused by it part rupturing as all the vessels on my mouth were twisted.
“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, doctors have told me I’m a miracle.”
Nikki has also had several teeth removed in a bid to control her facial AVM, but despite it all, she remained focused on her future.
She added: “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.
“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.”
When Nikki was first diagnosed her prognosis was bleak, with doctors not knowing how to control the bleeds, and Nikki’s life hung in the balance.
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.
She said: “I was so scared and doctors had no idea how to help, that all changed when Birmingham Children’s Hospital offered me a new treatment.
“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.
“I’m so thankful to every single person I have met on my journey with AVM, they have all made this experience a lot easier.”
Nikki has been supported throughout her treatment by The Butterfly AVM Charity, who specialise in helping sufferers.
George Christou, director of The Butterfly AVM Charity said: “I have been astounded by Nikki’s bravery in dealing with the everyday uncertainty that having an AVM can give a sufferer.
“The constant fear of having a large bleed control’s 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.
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