LONG wait ... Amy Evans, pictured with Jeremy, James, Danielle, Jennifer and Thomas is battling a rare condition and waiting for a lung transplant.
When Amy Evans, 32, found herself breathless after short walks her doctor thought she had asthma, but sent her to a specialist for more tests. "They wanted to make sure they weren't looking at a blood clot," she says.
"When I was sitting in the waiting room I read a story in an old Women's Weekly about Shani Eldridge and she had a condition called LAM.
"I had my husband with me and I said 'This sounds like me, she's breathless all the time'. He said not to be silly."
Eldridge and others discussed in that article were initially misdiagnosed with emphysema despite never smoking or placing themselves in a position to risk contracting the disease.
Only after further testing were they diagnosed with the rare lung disease Lymphangioleiomyomatosis, or LAM.
After seeing the specialist, Amy was diagnosed with the potentially fatal disease.
"I said to my doctor 'You're never going to believe this but I've read about this before'," Amy recalls.
The disease affects only women of childbearing age, and symptoms include a shortness of breath, coughing blood, chest pains and can cause the lungs to collapse.
The cause of the disease is unknown, although it is thought to be genetic.
There is no cure.
The only treatment is a lung transplant before an abnormal smooth muscle growth slowly smothers a patient's own lungs.
Amy, from Bentley Park in Cairns, says her lungs were at 50 per cent capacity when she was diagnosed two years ago, the same week Cyclone Larry pounded North Queensland.
Now they're down to 19 per cent capacity. Her right lung has collapsed and been patched up three times in three months.
She's been told she's a priority for a double lung transplant should any organs become available that match her blood type.
"The fact is that I probably won't live another 12 months without a lung transplant," she says. Read the full story.
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