"Take control” is a phrase Tim Demos, 27, has lived by since his teenage years when he battled with weight gain and mental health that stemmed from having severe haemophilia A, to today as an active and fit paramedic working in Melbourne. Tim wants other young haemophilia patients to follow his lead and use physical fitness as a path to better health with a rare blood disorder.
Tim starts his day at the gym where he runs through a specially designed workout created in consultation with his personal trainer and guidance from his physiotherapist. To his fellow gym-goers, Tim looks like someone dedicated to weight training and fitness. But what most people don’t realise is that Tim has the rare blood disorder, haemophilia, a deficiency in blood clotting activity which is characterised by bleeding into muscles and joints that can lead to debilitating joint health.1,2,3
Being active helped my severe haemophilia
Tim himself went through a period of isolation during his teenage years that led to depression and weight gain. But thanks to the support of his family, doctors, nurses and physiotherapist, Tim was able to take control of his lifestyle and improve his physical condition.
“Year 9 was a rough time in my life when I was in and out of hospital. I was fighting a personal battle with myself and it was only with the support of my family and the people around me that pulled me through. It was around then I realised getting into the gym was going to improve my physical and mental wellbeing and also have a positive impact on my joint health.”*
To support his training regime, Tim relies on a prophylaxis treatment regimen which he tailors to align with his physical activity levels. The coordination of his treatment around activity has been developed in conjunction with his care team.
Tim’s message to other young haemophilia patients is “take control and think long-term about your health. If you can stay strong and healthy in your teens and twenties then you’ll have a better chance of avoiding joint problems later in life.”*
*Appropriate exercise can assist joint health in people diagnosed with haemophilia.1,3,4,5 Patients should talk to their healthcare professional and care team about appropriate choices of treatment and activities to best support management of their haemophilia.
Tim, Haemophilia, Melbourne
“Going to the gym works for me, but being active can be anything that you’re interested in. It can be running, catching up with a mate down the park, throwing a frisbee for 20 minutes. Find something you’re passionate about that will give you an appropriate level of exercise.”
References:
1. Australian Haemophilia Centre Directors’ Organisation, and the National Blood Authority, Australia. Guidelines for the management of haemophilia in Australia, 2016. Available at
https://www.blood.gov.au/system/files/HaemophiliaGuidelines-interactive-updated-260317v2.pdf (accessed April 2021).
2. Australian Haemophilia Nurses Group (2018) Caring for people with inherited bleeding disorders. Available at: https://www.haemophilia.org.au/HFA/media/Documents/Ageing/RACF-BD-booklet-2018.pdf (accessed April 2021)
3. Physical activity in adolescents with haemophilia – Physiopedia. https://www.physio-pedia.com/index.php?title=Physical_Activity_in_Adolescents_with_Haemophilia&oldid=257873(accessed April 2021).
4. Mulder K. Exercises for people with hemophilia. World Federation of Hemophilia, 2006. Available at http://www1.wfh.org/publications/files/pdf-1302.pdf (accessed April 2021).
5. Schafer et al (2016) Physical exercise, pain and musculoskeletal function in patients with haemophilia: a systemic review. Haemophilia, 22, e119-e129