Charlotte Bradley-Peni is the Senior Social Worker at the Haemophilia and Haemostasis Centre, Fiona Stanley Hospital and Haemophilia Treatment Centre, Princess Margaret Hospital, Perth
Haemophilia Foundation Australia recently provided me with the opportunity to attend the World Congress in Orlando, Florida 2016. It was a pleasant surprise to find that unlike other large international meetings the community played a major role in bringing the Congress together. During the build up to my attendance I made the decision to focus on transition as a major psychosocial learning goal. However as day one progressed so too did my understanding.
Chair: Anne Duffy, Ireland
Sunday’s Psychosocial Professional Development Day “Let it Go” mapped the haemophilia journey focussing on the holistic psychosocial approach, dealing with stigma, sexuality and the use of humour in healing and coping with a chronic illness. This proved that the patient journey is based on not a single point in time but rather a lifelong continuum complicated by uncertainty and frustration, hope and successes. As a result I opened myself to the possibilities and in turn was introduced to a world of historical events that have led to improved health care, accountability, dedicated medical professionals and proactive community members who continually advocate for treatment for all. I was also reminded that treatment is not readily available in many regions leaving a considerable gap between those who have access to treatment and those that do not.
Throughout the week each presentation introduced a unique perspective on haemophilia and other bleeding conditions. Above all I was introduced to a community built on resilience in the face of adversity.
Chair: Robyn Shoemark, Australia
Young adult with haemophilia
– Chanthearithy Run, Cambodia
Among the inspiring presenters a young man, Chanthearithy Run from Cambodia, took us on a journey of what it means to have haemophilia in a developing country. To begin, he displayed a black and white photograph of his humble beginnings. This allowed the audience to note the reality of his upbringing which would later lead to incredible achievements. A small proportion of his story was not unlike other young men within the bleeding conditions community. Chanthearithy recalled his experience with multiple knee bleeds, a head bleed and many aspirations throughout his earlier years, a harsh reality of the condition for him. However, Chanthearithy’s overall experience proved somewhat removed from the experience of young Australians. His arduous hospital admissions, one of which spanned over one year, painted a clear picture of the difference in health care resources between Australia and Cambodia. He described his experiences as particularly difficult and it was not until 2009 that he was diagnosed with haemophilia. Without access to Government funded factor, Chanthearithy discussed the limiting effects of his condition and his decision to take preventative measures. “Starting at zero”, he reports that he has overcome the harsh reality of his condition following a fitness regime based on the understanding that a strong body would lessen the likelihood of bleeds.
As a result of integrating daily exercise including swimming and basic body movements Chanthearithy reports that he has minimised his bleeding challenges. As he discussed his accomplishments, his next slide displayed a photograph of a fit and healthy young man, an image that would easily challenge many of our famous Australian athletes! Adding to his success and despite his incredibly humble beginnings Chanthearithy has graduated with a Bachelor of Law from the Royal University of Law and Economics in Phnom Penh, Cambodia, has continued his studies in the English Language and continues to play a major role in the Cambodia Hemophilia Association. An inspiring story of an incredible young man who has fought to overcome the barriers placed in front of him as a result of his condition.
Congress was teeming with stories of positive outcomes and forecasts for future treatment. However, as I meandered through the exhibition hall another inspiring young person caught my attention. Sadly he was unable to present his journey in person, instead his mother Jeanne White-Ginder delivered her son Ryan White’s story. This heart wrenching account of a boy who lived until the age of 19 years silenced the room. Jeanne spoke of her son’s battle with AIDS following a transfusion of HIV-infected clotting factor during the 1980s, a sad reality associated with treatment of that era. Her story touched on the discrimination fuelled by a community that lacked education and associated understanding. It painted the picture of Ryan’s fight for equality and his eagerness to promote understanding. Ryan’s determination ultimately led to the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act USA, one major accomplishment among many achieved by this courageous and resilient young man. Sadly this account of discrimination, heart ache and the loss of a son is a story of our time, one that is in living memory. Despite advances in modern medicine this was a stark reminder that we as a community comprising of members and professionals must continue to advocate on behalf of oneself and others promoting wider community understanding thus ensuring progress towards equality and treatment for all.
Chair: Sylvia von Mackensen, Germany
"Bouncing Back": how to develop resilience in your child with a bleeding disorder
– Linda Dockrill, New Zealand
Each of the above personal accounts were based on stories of individuals from two vastly different worlds. However, both had one major similarity, resilience.
Unsurprisingly day four introduced a presentation that explored this very attribute and the important role it plays when human beings are faced with adversity. Social Worker Linda Dockrill of the Haemophilia Foundation of New Zealand provided an education session on parents developing resilience in their children with bleeding disorders. Linda’s informative presentation explored Ginsburg’s Seven C’s of Resilience which identifies competence, confidence, connection, character, contribution, coping and control as the primary base for fostering resilience. Linda’s presentation guided the audience through what it means to be resilient and how this can be ‘learned’. She noted the significance of learning how to thrive despite life’s challenges, the importance of empowering young people to make their own decisions and allow expression of emotion which will ultimately aide in the young person feeling comfortable reaching out during difficult times. Linda’s discussion additionally focussed on understanding the importance of personal contribution which serves as a purpose and motivation as well as the importance of learning to cope effectively with stress.
Both Chanthearithy and Ryan transformed their experience of haemophilia and associated conditions to a cause for change. Their stories reflected the points in Linda's presentation on developing resilience. With the support from their personal networks each demonstrated competence and confidence in their fight for the greater good exemplifying what one individual can achieve in the fight for better outcomes for themselves and the wider community. Each young man demonstrated innate control of their situation and coped with a journey otherwise foreign to those around them. Ultimately they contributed to their community, promoting positive change and hope which in Ryan White’s case reigned over 25 years and counting.
My overall experience of Congress was motivating. I was provided with the opportunity to meet some of the most inspiring proactive people forging change within the bleeding conditions community. I had the great pleasure of spending time with parents’ and family caregivers, hearing their stories of guilt, hope and triumphs, learning from veteran psychosocial practitioners and forming several working relationships that can only strengthen our international partnerships. Above all I encountered the real meaning of resilience and global community. For now I am looking forward to actioning the education I received and intend on feeding my experience back to Fiona Stanley Hospital, Princess Margaret Hospital and the HFWA all of whom provided exceptional support with my trip to Orlando.
Charlotte was funded by HFA to represent the Australia/New Zealand Haemophilia Social Haemophilia Social Workers’ & Counsellors’ Group at the WFH 2016 World Congress
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