Matthew Roseworne, of Surfside, wants a fair go for men with a chromosome disorder almost as common as Down syndrome.
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Mr Roseworne has Klinefelter syndrome, which affects about one in 450 men – for comparison, just one in 1,100 babies in Australia are born with Down syndrome.
Men with Klinefelter syndrome have an extra X chromosome, in addition to the X and Y chromosomes which all men have. The syndrome can cause infertility, incomplete puberty, language and learning problems and depression. Affected men are at higher risk of developing osteoporosis, diabetes, breast cancer, testicular cancer and other chronic conditions.
However, only about half of all cases are diagnosed, and diagnosis is often dependent on a treating doctor having experience with Klinefelter syndrome.
Men with Klinefelter syndrome can feel isolated and unsupported, as they grapple with systems that may not understand or cater for their needs.
A later-life diagnosis can also result in challenges negotiating identity, particularly masculinity.
Living in a rural area can make things harder – and Mr Roseworne wants to combat the challenges men with Klinefelter syndrome face by raising awareness of the condition.
Mr Roseworne is 36 years old, and says he was diagnosed at 16. Although testosterone supplementation can improve some symptoms, Mr Roseworne said it’s not one-size-fits-all.
“At the time (I was diagnosed), I didn’t want to take medication (testosterone), so I was on and off it, and I’ve been on and off it for 20 years,” he said.
“I didn’t feel it make any difference, and the needle hurts too much. I don’t want to go through that every three months.
“At the moment I don’t want to take anything, because God made me this way – I’m not Christian, but I do believe something made us.”
Mr Roseworne said getting a diagnosis was challenging – but the tough times didn’t stop there.
“When I was growing up, I went from doctor to doctor trying to find out what I’ve got – why I’ve got low muscle tone, being clumsy, being sore and in pain, why I was not developing as much as my peers,” he said.
“When I was 16, my doctor gave me a karyotype test, and found out I had Klinefelter syndrome.
“It took me ten years to be able to get the pension with Centrelink, because they wouldn't recognise it as a disability.
“There is no (support) association here in Australia. They have one in the UK, Canada, America, but it just feels like we come last for everything here.”
Mr Roseworne has taken to social media to raise awareness – and hopes other affected men will join him.
“I talk about Klinefelter syndrome on my YouTube channel. I know I might not look disabled, but on the inside I am,” he said.
“One in 500 men have this, but they don’t get diagnosed. They don’t detect it at birth here in Australia.
“Some of us can’t grow facial hair – I couldn’t grow a beard until I was 30. For Mo’vember I shave it off for men’s health.
“I even tried to contact Mo’vember to say ‘hey, I have syndrome that only affects men’, but they wouldn’t have a bar of it.
“They said they were concentrated on testicular and prostate cancer, but people with Klinefelter syndrome have a greater risk of testicular cancer – and breast cancer too, because we have breast tissue.
“I don’t know if there is anyone down here except for me that has Klinefelter syndrome. But if you do have it, there are groups out there on Facebook, and I want to make a foundation down here to support people with Klinefelter, and people with other disabilities as well.”
