Mum-to-two who suffers with horrific condition ‘harder to control than cancer’ had to have half her face cut off
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A mum-of-two who suffers from a horrific condition that is ‘harder to control than cancer’ has had half her face cut off.
Louise Brent, 58, from Hull, suffers from facial arterial venous malformation (AVM) – a malformation of veins and capillaries – which has almost killed her twice.
And despite having had two massive operations to try and save her, Louise is still suffering hoping to raise £25,000 for pioneering surgery.
Louise said: “In my last operation the surgeon basically cut the side of my face off.
“I will never be completely normal looking again because with so much surgery and damage that has been done but I want to try and save my life.
“Now I just have to put on a brave face and get on with life.”
Louise spent most of her life unaware that she had the condition.
The only sign was a faint line down the side of her face when she was born, which disappeared when she was a child.
Then, when she was 45-years-old, she noticed a pulse beating in her face.
She visited her GP, who diagnosed it as AVM and gave her treatment and believed that would be the end of it.
It was only when she began suffering from intense migraines, a common symptom of the disease, that she was referred to Leeds General Infirmary for a major operation on her face to remove the AVM.
She said: “I was completely disfigured when I came round, just an absolute mess.
“My nose had dropped and everything.”
Soon after surgery she began to suffer life-threatening facial bleeds, and, on one occasion, came close to death after losing three pints of blood.
“I had a massive bleed – this is what can happen with AGM if it not treated properly, apparently,” she said.
“I almost died twice and they rushed me into York hospital, which is the nearest from here.”
AVM causes the veins to dissipate, causing them to tangle and, when it flares up, they spread like the “branches of a tree”.
But Louise was eventually told by Leeds General Infirmary that nothing more could be done.
She started to research the condition and found a professor in the US who is a specialist in treating AVMs.
Louise travelled to the US where she underwent major surgery, but she needs further treatment on her eye to potentially stop her from going blind in one eye.
But after spending over £100,000 her money is now running out.
“I had no choice but to go to America,” she said.
“We went to the US last July for my first treatment, where, basically, he cut the side of my face off.
“It was massive surgery, 12 hours, and then it didn’t heal properly while we were there and he had to do another five-hour operation.”
The money she has spent so far has been paid for with her husband’s redundancy and generous donations from her family.
She fears she could one day be forced to remortgage her house to pay for the treatment.
Now, she is turning to the strangers to raise further funds for treatment that she hopes will rid her of the disease completely.
She said: “I started doing a lot more research and found a professor in Arkansas.
“He says they are more difficult to control and sort than cancer because, if you leave anything behind, it just regrows aggressively.”
“What the surgeon has done is amazing.
“But I need so much more help.”
Visit www.gofundme.com/o1lqwc to donate.