Wilson woman suffers rare LAM disease

Wilson woman suffers rare LAM disease

THERE is a certain heaviness over Kate Wingrove.

It comes from within her lungs, which are riddled with cysts.

It is present when she grapples profound and painful decisions with her loved ones.

Ms Wingrove, of Wilson, has a rare and degenerative lung condition known by its abbreviated name as LAM.

Just 12 women in WA currently experience lymphangioleio​myomatosis.

It only affects women, to varying degrees, and appears to be accelerated by the hormone oestrogen.

The average age of diagnosis is 35 years, but most women notice symptoms long before LAM is diagnosed and women are often misdiagnosed.

“I was breathless all the time,” Ms Wingrove said. “I put it down to pregnancy when I couldn’t walk up the stairs to do my work as a social worker.”

Doctors thought she had anxiety and checked her heart after the birth of her son but her oxygen levels were not monitored until she took an ambulance to Fremantle Hospital with severe back pain after the birth of her second child.

CT scans and x-rays were sent to a specialist in Melbourne where a LAM diagnosis was confirmed.

Ms Wingrove was 39 – with a two-month-old daughter and 22-month-old son – when she was told she had two to eight years to live.

More than six years since her diagnosis, Ms Wingrove says the disease is isolating not only because it is rare but because it leaves her exhausted, on oxygen around the clock, and in severe pain, prone to infection and coughing up blood when a cyst bursts.

Her ambition is to see her primary-school aged children graduate, and she dreams of holding a grandchild.

She has delayed the prospect of a lung transplant because of the surgical risks and possible negative impact on her quality of life. A transplant could add three to seven years.

In the meantime, she visits Fiona Stanley Hospital’s advanced lung disease unit every two months where staff ask if they can listen to her lungs to learn more about the condition.

Ms Wingrove is on a drug trial, and uses movie tickets donated by the Red Cross to spend quality time with her children.

She sells the Entertainment Books to fundraise for LAM Australia in the hope a successful treatment may be found.

Ms Wingrove is listed as the State’s patient support contact, and will attend a fundraiser for the LAM Australia Research Alliance organised by school mum friend Donna Albertini at the Leopold Hotel on February 18.

FACTBOX

WHAT: LAM Australia fundraiser with live music by The 80’s Underground, plus a raffle, silent auction and door prizes.

WHEN: Saturday, February 18, doors open 7.30pm

WHERE: Leopold Hotel

Tickets: Online $20 at oztix.com.au, $25 at door. Tickets are limited.

To donate or for more info on LAM visit lamaustralia.org.au