A young Perth woman faces an uncertain future because a basketball-sized growth is placing extreme stress on her heart and causing her crippling pain.
Jasmine De Mamiel-Clapp lives with a severe case of arteriovenous malformation (AVM), meaning her vessels are twisted and enlarged.
The flow of blood through a tangle of vessels has resulted in a large mass covering one side of the 20-year-old’s back, shoulder and arm, putting her in the early stages of high-output heart failure — a condition in which the heart cannot keep up with the body’s demand for blood.
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Everyday tasks are at times impossible, with Jasmine struggling to complete even simple chores such as making her bed or tying up her hair.
It has also forced her to put dreams of becoming a childcare educator on hold.
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“The pain is sometimes unbearable. I’m in tears when I wake up,” she said.
Experts say the condition leaves patients at risk of bleeding, impaired organ function and, in extreme cases such as Jasmine’s, heart failure.
A malformation this advanced in someone so young is rare, making the task of curing it even more difficult.
“I don’t like going out because there is a risk someone bumps into me too hard or say I fell over and landed on it,” she said.
“It could rupture one of the arteries and I could bleed out internally and no one would know.”
Jasmine De Mamiel-Clapp lives with a severe case of arteriovenous malformation (AVM). Credit: 7NEWSDe Mamiel-Clapp’s blood vessells should look like the example in the left box, but are instead like those in the right. Credit: 7NEWS
Insolent stares from people she doesn’t know means she covers up with a jumper, even on hot days.
She says other than that, “there’s not much I can do”.
Medication taken to quell her significant discomfort also tires her quickly.
The AVM was discovered when Jasmine broke her shoulder blade as a child.
At the time it was the size of a 20 cent piece but doctors were hesitant to touch the mass until she reached adulthood.
“Fed by blood and arteries”, it has increased “rapidly” over the last few years and so too has the pain.
De Mamiel-Clapp has undergone surgery to stop the flow of blood from feeding the mass, with more likely to come. Credit: 7NEWS
She recently underwent surgery in an attempt by doctors to slow the flow of blood, and will require significantly more treatment over the coming months.
Doctors in WA have told her there is little they can do to shrink the mass or remove it, given the amount of blood that flows through it and because of its proximity to the heart.
She revealed that at one point she asked doctors if removing her arm would be a simpler solution.
Given the pressure on her heart, she fears she may only have years to live if a long-term solution isn’t found.
Search for hope
Jasmine is willing to search far and wide for answers, even if it means exploring options interstate and overseas.
A fundraiser has been set up to help cover expenses while they search for someone who can reduce the size of the AVM, give her back mobility and reduce her discomfort.
“If anyone overseas or anywhere knew what to do, it would be absolutely amazing,” she said.
Loved ones are desperate too.
“(Jasmine) is a kind, beautiful young woman who we absolutely want to keep around for as long as we possibly can,” sister-in-law Carly Hammond said.
“It would mean the world to us to be able to see her achieve all her goals and live a healthy life eventually.”
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