Embracing life with haemophilia

Sam is like any other Aussie bloke – he flats with his best friend, visits the beach and pub with his mates on a regular basis, plays the odd game of tennis, and travels extensively around the world. At first sight, you would never consider he was living with a serious bleeding disorder, one that has seen him in and out of hospital for the best part of his life and having to inject himself every other day.

Sam was just 12 months old when he was diagnosed with haemophilia – a serious, inherited bleeding disorder in which a person’s blood does not clot properly. His parents suspected something ‘wasn’t quite right’ around the time he started crawling and began developing severe bruising on his hands, face and body.  After countless visits to GPs and paediatricians, Sam was finally diagnosed with haemophilia A, the most common form of bleeding disorder.1 To make matters worse, Sam also has ‘inhibitors’, which means the most common type of treatment (FVIII treatment) is not effective for him.

Up to two in three people living with haemophilia have a family history of the disease.2 Although Sam’s mum then discovered she was a carrier of haemophilia, he was the first member of his family known to be living with the disease.

When the father has haemophilia and the mother is unaffected

None of the sons will have haemophilia. All of the daughters will carry the gene. Some might have symptoms.2

When the mother carries the altered gene causing haemophilia and the father is unaffected

There is a 50% chance at each birth that a son will have haemophilia.. There is a 50% chance at each birth that a daughter will carry the gene. Some might have symptoms.2

Now aged 31, insurance broker and avid traveller Sam, shares his story of how he has embraced life and all its challenges, despite his physical limitations, and ongoing battle with several long-term haemophilia-related complications.

“I always remember a normal childhood. My parents never wrapped me in cotton wool. They never told me, ‘no you can’t do that’ and they didn’t allow me to worry about the ‘what ifs’,” Sam recalls.

“And while for many years I tried to avoid contact sports, I still had a skateboard, a bike and a scooter, and I played with my friends like any other normal kid.”

“I also remember my trips travelling the country with my family,” Sam recalls. “And, while these trips were not uneventful, I still did a lot of things – I climbed to the top of Uluru; I walked the Three Sisters in the Blue Mountains; went to Perth; explored South Australia; travelled the Great Ocean Road; and was dragged through the waters of the Barrier Reef when I couldn’t walk. While it affected things, it didn't stop us doing as much as we could.”

However, behind this ‘normal’ life, Sam’s childhood and early teens involved almost weekly visits to hospital emergency, or admission for multiple days at a time, after a fall from his bike or a playground injury.

“Sometimes I would run around the playground at lunchtime, and suddenly start limping. That usually signalled my last day at school for the week.

“While all of my classmates were attending school five days a week, I was lucky to make even two-to-three days a week, which made it really hard to keep up,” Sam said.

While Sam is upbeat about his life, he did experience two particularly low points. When he was 12, he received an infected blood product from which he developed hepatitis C. While he has recently been cured of the disease, it has nonetheless, caused irreversible damage to his liver.

Then, at 16, Sam spent five-and-a-half months in hospital undergoing a ‘tolerisation’ process to enable his body to accept FVIII treatment. Following this, Sam and his family decided to take a well-earned break.  But while on holiday, Sam’s port-a-cath (vein access device) became infected, resulting in septicaemia, or blood poisoning. This resulted in yet another five-month-long hospital stay, which prevented Sam from graduating year 10, forcing him to repeat the year.

Those living with a bleeding disorder are at heightened risk of infection from vein access devices (commonly used in the management of haemophilia), to viral infections from blood products.³

“I just wanted school to be over! I wasn’t really focusing on achieving good academic results at the time. I just wanted to enjoy my last years at school and have fun,” said Sam.

Finally graduating from year 12 and finishing school enabled Sam to focus on his love of travel – he has travelled through Europe, the United States and Japan over the years. He was later granted the opportunity to attend two international events organised by World Federation of Hemophilia, as a representative of Haemophilia Foundation Australia, the first in Panama in 2017 and the second in Myanmar in 2019.

Now working full-time as an insurance broker, Sam’s condition is well managed thanks to advances in haemophilia treatment over the years. However, he still has to contend with the long-term effects of unmanaged haemophilia from his younger years, including arthritis in his ankles and an elbow caused by previous bleeds into joints.

That aside, Sam says he’s doing “really well”. He says: “You can’t sit and pretend you’re not affected by it but you can’t let it stop you from being who you want to be.

“Obviously living with haemophilia does affect some aspects of my life, because there are some things I just can’t physically do. So, I like to be prepared, should something go wrong,” said Sam.

Just beacuase you have haemophilia doesn't mean you need to be defined by it.

Over the years, Sam has been involved with Haemophilia Foundation Australia (HFA) – which is the national peak body that represents people with haemophilia, von Willebrand disease and other bleeding disorders. His message to others living with haemophilia is “Just get on with it.”

“Get out there and do as much as you can and just deal with the issues that arise. Don’t limit yourself,” he says.

HFA Executive Director, Sharon Caris, says that while there is more work to be done, she has high hopes for the future of the Australian haemophilia community.

“While many Australians don’t know much about haemophilia, unless they have a friend or family member living with the disorder, awareness is definitely increasing.

“Fortunately, after many years of few developments, we are now in an exciting time in which new haemophilia treatments and biotechnologies are coming to market,” Sharon said.

“I hope to see these emerging therapies improving the lives of those with haemophilia, and their families, and minimising the disorder’s interference on school attendance, employment and everyday life.

“Haemophilia Foundation will continue to work with decision makers to ensure our community’s voice is heard, and that Australians living with haemophilia have choice and access to the best possible care,” said Sharon.

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  1. Haemophilia Foundation Australia. About Bleeding Disorders: Haemophilia. Available at: https://www.haemophilia.org.au/about-bleeding-disorders/haemophilia.

    [Last accessed: April, 2019].

  2. Haemophilia Foundation Australia. Haemophilia Foundation Australia. Haemophilia. Rev. edn. Melbourne: HFA, 2013. Available at: https://www.haemophilia.org.au/HFA/media/Documents/Haemophilia/Haemophilia-booklet.pdf.

    [Last accessed: July, 2019].

  3. Australian haemophilia Centre Directors’ organisation & the National Blood Authority. 2016. Guidelines for the management of haemophilia in Australia. Available at: https://www.blood.gov.au/system/files/HaemophiliaGuidelines-interactive-updated-260317v2.pdf.

    [Last accessed: April, 2019].

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