Growing Older with Haemophilia ~ Jason
GROWING OLDER WITH HAEMOPHILIA
Advances in haemophilia treatment and care over the last few decades have meant that there has been overall increase in life expectancy for people with haemophilia, and many are now living into their senior years.(1)
Jason, now 44 years old, has mild haemophilia and recalls the very different story he was told when he was first diagnosed as a teenager:
“The doctor said my life expectancy was 30. So when you've got a kid who's 13 and is told they might only live to 30, how daunting is that!”
Growing older with haemophilia has raised another set of issues. Men with haemophilia who are now in their mid-20s or older lived through a time when prophylaxis was not yet available and there were treatment shortages at times. Most now have haemophilia-related arthritis from repeated bleeding into joints. They also experienced the hepatitis C and HIV epidemics in the bleeding disorders community in the 1980s, where many acquired bloodborne viruses from infected clotting factor concentrates.
As a result, issues of ageing, such as mobility and pain problems relating to arthritis, occur at a much earlier age in this generation of men with haemophilia – in general at around 35-40 years, although it can be at a younger age if they have had many bleeding episodes, particularly if they have had inhibitors and their treatment has not been effective. (1,2,3)
Even with mild haemophilia, and not having as many bleeding episodes as someone with moderate or severe haemophilia, Jason hasn’t escaped without some complications.
“Now at the age of 44, I have some osteoarthritis in my right knee. My condition has absolutely had an effect on my life, and I do have to take care of myself more than others. I still keep active, training with the local over 35s football team, riding my bike and running on nice soft grass to keep my joints in order.”
He also acquired hepatitis C, he suspects from a blood product he received when he was 13.
“I was diagnosed with hepatitis C in 2005 after a routine medical check. In the 1980s, most people with bleeding disorders were exposed to hepatitis C virus before it had been ‘discovered’. I underwent treatment and I am now hepatitis C free.”
RESILIENCE AND FATIGUE
HFA’s community consultations have highlighted that the Australian bleeding disorders community has a culture of stoicism and resilience. As one man with haemophilia said, “you learn to live with haemophilia. You’re born with it, you grow up with it.”
In spite of the good news that lifespans for many have increased, it is a community that remains aware of its vulnerability; that, for example, a head injury or a bloodborne virus like HIV or hepatitis C might tragically cut short a life.
The pain of bleeds and arthritis, the complications of bloodborne viruses if they have them, and limitations of their haemophilia can be challenging and make it hard to maintain a positive approach to their life. (4,5)
“I still train with the over 35s 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.”
Photo: Jason recovering from a bleed
The very successful men’s peer support groups in some local Foundations show how valuable it can be to have a face-to-face relaxed environment for men to chat together about ordinary things like sport and cars, while at the same time sharing strategies for managing their health and wellbeing and learning about relevant health issues and services. Foundations are also exploring ways to do this online.
To read full article visit https://tinyurl.com/kswrhjvu
For more information about connecting to others, visit the HFA Getting Older Hub.
Date last reviewed: 14 March 2023