A woman who could bleed to death through her face due to a rare disease is seeking lifesaving treatment.
Mum-of-two Louise Brent has horrific facial scars from facial arterial venous malformation (AVM) – an abnormality of veins and capillaries – which has almost killed her twice.
A doctor has described her condition as “harder to control than cancer”.
It could ultimately lead to her bleeding to death.
But after British surgeons told her there was nothing more they could do, Mrs Brent, of Seaton Ross, Hull, East Yorkshire, travelled to the US where she underwent major surgery.
But after spending more than £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.”
Mrs Brent 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.
She believed that would be the end of it, until she began suffering from intense migraines, which is a common symptom of the disease.
She was then referred to Leeds General Infirmary for a major operation on her face to remove the AVM.
“I was completely disfigured when I came round, just an absolute mess,” she said.
“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 AVM 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”.
Mrs Brent 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.
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 re-mortgage her house to pay for the treatment.
Now, she is turning to the people of East Yorkshire to raise further funds for treatment that she hopes will rid her of the disease completely.
“I started doing a lot more research and found a professor in Arkansas,” she said. “He says they are more difficult to control and sort than cancer because, if you leave anything behind, it just regrows aggressively.”
Mrs Brent recently returned from her latest trip, which focused on removing the AVM in her lips and forehead. She needs further treatment to potentially stop her from going blind in one eye.
“What the surgeon has done is amazing,” she said. “I will never be completely normal looking again because with so much surgery and damage that has been done. I have just had to get on with it, put on a brave face and get on with life.”
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