A Reason to Give
Our community is facing a serious health crisis - and we need to act now.
From just 35 years old, men with haemophilia are developing serious health problems and chronic pain usually faced by men in their 70's.
We are asking for your help today to give men like Jason the urgent support they need to take back control of their health and wellbeing.
Isolated from their communities by pain and lack of mobility, many men are feeling overwhelmed and unsupported. They urgently need help so they can regain control of their health, before it’s too late.
With your generous support, you will help to fund crucial research into the best ways to help these men, and help them access vital peer support and information resources.
Your gift today will help to produce vital information for men with haemophilia about how to look after their health, and to deliver regular peer support programs to communities right across Australia – so that they will have the chance to share their experiences, support each other and stay active in a safe environment.
Not only will you be giving men like Jason the support they so badly need – you’ll also be giving today’s boys and young men a safe, healthy future where their needs are fully understood and supported.
“I was told I might only live to 30. How daunting is that for a kid of 13? I'm 44 now, and I'm mostly fit and healthy, but there aren't many people who've got to my age with my condition relatively unscathed".
Thanks to the advances in treatment and care, people with haemophilia are living longer and children born with haemophilia now can usually live full and active lives like their friends.
But in 1985, this was not the case. And Jason's diagnosis at age 13 changed everything.
“It was all doom and gloom back then. I remember Mum and Dad telling me I couldn't play any more sport, and that they’d have to change the way they allowed me to be. All I lived for was football, and that came to an abrupt stop.”
Knowing an injury could mean an urgent dash to hospital, Jason’s family had to be careful about everything they did, and always be ready to act if he began to bleed.
“We had to change so much because of my diagnosis. It had a massive impact on our lives.”
Jason is now 44. He’s part of a generation of men who’ve overcome a lifetime of challenges and defied all expectations. But now they’re facing a serious crisis – and they urgently need your help.
We are now discovering the terrible impact haemophilia can have as men begin to age.
Men as young as 35 are developing chronic health problems that they wouldn’t usually face until their late 60s and 70s. As well as debilitating conditions like arthritis and osteoporosis, they’re facing life-threatening illnesses like heart disease, kidney failure and cancer.
Isolated from their communities by pain and lack of mobility, many of these men are feeling overwhelmed and unsupported. They urgently need help so they can regain control of their health, before it’s too late.
Your gift today will help to fund crucial research into the best ways to help these men, and help them access vital peer support and information resources.
As a father of three, with a successful career and a loving family, Jason considers himself very lucky. But his journey hasn’t been easy.
Jason’s diagnosis coincided with the discovery that HIV had entered the blood supply and haemophilia treatment products had been contaminated. Many people with bleeding disorders had been affected, and in many people’s minds, HIV and haemophilia became firmly linked. Jason escaped HIV, but because of the fear and stigma, he felt he had to hide his diagnosis from everyone.
“I had heaps of people asking me why I wasn't playing football anymore but I didn't want anyone to find out about the haemophilia. Everything was fear back then, so I kept it to myself. Even my close friends didn't know I had it.”
Many men like Jason grew up feeling isolated and excluded because of the impact haemophilia had on their lives. Today, these men are facing loneliness and isolation once again, as they battle with painful conditions like arthritis that can make it hard for them to take part in sports or community activities.
“I have osteoarthritis in my right knee now. I still train with the over 35's masters football, but it's really frustrating. I train really well on the track, and people ask why I don’t play, but I know my limitations. I still have to be careful what I do, and the difficult thing is the pain. People don’t understand that if I get a bleed it will knock me around for a week or two.”
As well as chronic pain and joint damage, men over 35 who have haemophilia are developing multiple other health conditions that they wouldn’t usually face until their late 60s and 70s – like heart disease, cancer, kidney failure and osteoporosis. Many are also living with the effects of HIV and Hepatitis C, contracted in their childhoods from contaminated blood products.
Until now these men have gone unnoticed, because some of their challenges are so new to our community.
That’s why we need your help. We know there’s a serious gap in our services, putting men like Jason at risk. But you can help close that gap, and give these men the care and assistance they desperately need.
Please donate now to help them get the care and support they need to live comfortable and fulfilling lives.
Thank you so much for your support.
Not only will you be giving men like Jason the support they so badly need – you’ll also be giving today’s boys and young men a safe, healthy future where their needs are fully understood.
Date last reviewed: 9/11/16