A nursing perspective
JEN DOWBNIA AND LARA OLSON
Jen Dowbnia and Lara Olson are Haemophilia Clinical Nurses at the Haemophilia & Haemostatis Centre, Fiona Stanley Hospital, Perth, WA.
While people with haemophilia are familiar with deficiencies in factor VIII/8 (haemophilia A) and factor IX/9 (haemophilia B), factor X/10 deficiency is much rarer and less commonly discussed. It is estimated that 1 in 1,000,000 people are diagnosed worldwide, with approximately 30 people diagnosed in Australia.
Factor X deficiency is a rare bleeding disorder that may be inherited or acquired. It can lead to symptoms ranging from easy bruising and nosebleeds to severe joint or internal bleeding, particularly in the severe form of the condition. Factor X deficiency affects male and females equally and can range from mild to severe, with severe patients requiring prophylaxis (preventive treatment).
As haemophilia nurses in Australia, we work within a multidisciplinary comprehensive care model. That means we coordinate with haematologists, general practitioners, social workers, physiotherapists, and sometimes genetic counsellors to ensure holistic care for patients with bleeding disorders – including rare ones like factor X deficiency.
Most patients are referred to Haemophilia Treatment Centres (HTCs) across Australia after abnormal bleeding episodes or family history leads to further investigation. Blood tests such as prothrombin time (PT) and activated partial thromboplastin time (aPTT), along with specific factor assays, confirm the diagnosis.
As haemophilia nurses, we help:
The mainstay of treatment for moderate to severe factor X deficiency is plasma-derived factor X concentrate, currently available in a multiple factor Prothrombin Complex Concentrate/PCC (eg, Beriplex AU®). This treatment is provided at no cost to patients through the National Blood Authority (NBA), which sources and supplies blood products to HTCs on behalf of Australian and state/territory governments.
Other treatments may include:
Researchers are always looking for new ways to treat bleeding disorders and treatments are advancing rapidly. It’s important that people with factor X deficiency stay in touch with their HTC and discuss their treatment options to determine which one would best suit them and if new options are available.
As nurses, we ensure:
Australia is fortunate to have a well-structured bleeding disorders network, with HTCs located in major cities and support from Haemophilia Foundations – Haemophilia Foundation Australia (HFA) and state/territory Foundations. Access to factor replacement therapy is funded by the government, and some delivery options reduce the burden on rural or remote patients.
However, challenges still exist:
Nurses play a key role in advocating for timely referrals and bridging care gaps, particularly through telehealth, which has grown significantly since the COVID-19 pandemic.
BEL’S STORY
I was born with factor X deficiency, a rare genetic bleeding disorder that affects the blood’s ability to clot. Every week, I give myself an injection to prevent spontaneous bleeds. It’s a non-negotiable part of my routine, even when the rest of life feels chaotic.
As a child, I never thought much of it. It was just my ‘normal’. But as I became a teenager and started wanting more independence, I struggled. Like many young people, I pushed boundaries and resisted treatment.
As an adult now, I still have days where I can’t be bothered doing treatment and wish I didn’t have to, but I learned pretty quickly what happens when I skip it and end up with a bleed. I’m also very lucky that my husband knows how to do my treatment and can help me. His support has been especially important during my period, when I have days that are quite heavy due to the condition.
I’ve been fortunate to travel, work remotely on the mines, and do pretty much everything I’ve wanted without being held back. My travel bags might be a little fuller than most, but I’ve never had any problems bringing my supplies on holidays or on mine sites.
Having factor X has even opened up opportunities I wouldn’t have had otherwise. I’ve met like-minded people, been involved in youth work, and attended haemophilia camps, all of which have added real value to my life.
Over time, I’ve come to accept that this is something I’ll live with for the rest of my life. It’s just part of my routine now. Having a strong support system, including my Haemophilia Treatment Centre, as well as my family and friends, has made all the difference.
Although it can be daunting to receive a rare diagnosis, patients in Australia are not alone. With the support of knowledgeable healthcare providers, including nurses who specialise in bleeding disorders, it is possible to live a full and active life.
Top nursing tips:
Factor X deficiency may be rare, but in Australia, we have the infrastructure, expertise, and compassion to manage it effectively. As nurses, our mission is to empower patients with knowledge, confidence, and a safety net of care—no matter how rare the condition.
For more information or support, contact your local Haemophilia Treatment Centre or visit Haemophilia Foundation Australia. Contact details can be found at www.haemophilia.org.au.
Australian Bleeding Disorders Registry Annual Report 2023-2024. National Blood Authority: Canberra, 2024. Accessed 14 August 2025.
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