Alison Morris is Senior Musculoskeletal Physiotherapist at the Princess Margaret Hospital for Children, Perth, Western Australia
The Congress organisers had put together a fantastic program of plenary and discipline-specific sessions combined with a large number of excellent poster presentations, satellite symposia and a full schedule of social events. For me, the greatest challenge each day was to decide which sessions to attend.
Achieving the impossible: The Marathon Experience
– Luigi Solimeno, Italy
Prior to the opening of the Congress, I attended the Musculoskeletal Professional Development Day with a presentation by Dr Luigi Solimeno from Italy. In 2015, he ran alongside eight of his bleeding disorder patients as they completed the New York Marathon. These eight men all with haemophilia (4 severe, 2 moderate and 2 mild) were aged between 23 and 51 years of age and had a wide range of joint pathologies including multiple joint replacements. They undertook a comprehensive 12 month training program under the guidance of a physiotherapist before completing the event. Issues, challenges and complications were openly discussed including one runner sustaining a stress fracture of his femur, which subsequently required joint replacement.
The presentation elicited considerable discussion including some strong criticism from those in the audience that felt that this project was ethically wrong. The Italian team reiterated that they were definitely not advocating all PWH could or should complete these types of events; it just demonstrated what could be achieved by a dedicated and motivated group of individuals with a structured, well supervised physical preparation and adequate treatment/prophylaxis. I was unsure where I sat regarding the ethics of the project. However, I envisage that in the future, as the younger generation grow up with less or ideally no joint pathology, we are going to see more and more of them choosing to follow their dreams of participating in events in which they may have been previously excluded. The take home message is to liaise closely with the Haemophilia Treatment Centre team in discussions regarding physical activity.
Engaging people with hemophilia through the use of Point of Care Ultrasound
– Sandra Squire, Canada
Point of Care Ultrasound (POC-US) was the focus of multiple presentations and posters at the Congress and it was exciting to see the progress that has been made in incorporating this into standard care in countries such as the USA, Canada and the UK. POC-US is an ultrasound examination designed to complement a physical examination. It is performed and interpreted in the clinic setting, therefore being time and cost effective. When following specific protocols, it is reliable for evaluating and monitoring joint status over time and in differentiating between a bleeding joint and arthritis. In addition to providing another objective measure of joint status of the ankle, knee and ankle, a major benefit of POC-US is the increased patient compliance that appears to be associated with it.
Vancouver physiotherapist, Sandra Squire, gave an exciting presentation the use of Point of Care Ultrasound to engage people with haemophilia in their care. Findings of a pilot study showed that the patients valued the opportunity to visualize the status of their joints and this lead to better engagement. Patient adherence with physiotherapy treatment protocols following muscle and joint bleeds was also thought to be improved using this visual feedback tool. Physiotherapists know that pain is an unreliable measure to guide return to activity and using POC-US to show resolution of bleeding could be extremely helpful. The need for quality assurance, training and recognition of the limitations of POC-US was conveyed by a number of the presenters and was also raised frequently by members of the audience.
A number of Australian physiotherapists have recently undertaken training in the performance of some aspects of POC-US and are involved in the implementation of hospital protocols around its use and the purchase of suitable machines. Ask the physiotherapist at your Haemophilia Treatment Centre about the current state of play regarding this exciting tool.
Role of Family: Prophylaxis a right, a duty, a choice?
– Megan Adediran, Nigeria
Having positive role models is an important part of an individual’s personal development and there was no shortage of role models presenting at the WFH Congress. Those that attended the Melbourne Congress in 2014 may remember the passionate speech Megan Adediran gave at the Opening Ceremony. Megan told of her personal fight to gain access to treatment for her two young sons born with severe haemophilia, involving personally writing to over 60 Federations asking for assistance. She subsequently became the founder of the Haemophilia Federation of Nigeria and has worked tirelessly to promote access to care ever since. This speech had a profound impact on me and it was therefore with great excitement that I looked forward to her presentation on prophylaxis. Again she didn’t disappoint, despite a technical issue resulting in her slides not loading. Undeterred, she proceeded to tell another heart wrenching story of a young girl, with no consistent access to factor, facing amputation of her lower limb to manage a pseudotumour. Megan advocated for the family, managed to secure regular access to factor and a promise of a period of conservative treatment. The end result was that the young girl has now returned to school and is participating in normal childhood activities!!
Plenary – Empowerment through self-care
– Patrick Lynch, USA
Patrick Lynch is another young man who ticks all the role model boxes especially for those young men growing up with a bleeding disorder. In his presentation he started by outlining his struggle in accepting his brother’s death as a result of an intracranial bleed whilst at University. Why had his brother, who had the same condition, was brought up in the same environment with the same education made the decision to stop his prophylaxis/self care regime – an act that Patrick would never have considered? Patrick has subsequently gone on to redefine self care from complying with your treatment regime to giving back to and empowering the community. Based upon the TV series, The Office, he has filmed a mini-series Stop The Bleeding which uses humour in an attempt to engage young people at risk.
In addition to the fantastic educational sessions, there was also a full social program providing opportunities to catch up with friends from around the world, make new ones and develop new professional links. Since returning, I have already received emails from physiotherapists in the Netherlands and the USA providing further information on innovative treatment approaches. Overall, the World Congress was an amazing five days from which I benefitted so much both educationally and personally. I would like to thank HFA for their financial assistance in enabling me to attend the Congress and look forward to getting back into the hospital and playing my small part in improving the lives of those in Australia living with bleeding disorders.
Alison was funded by HFA to represent the Australian and New Zealand Physiotherapy Haemophilia Group at the WFH 2016 World Congress.
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