YUHSUAN (YOSHI) LIN
Yuhsuan Lin (Yoshi) is Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia.
Attending EAHAD 2025 in Milan, Italy was a fantastic and enriching experience. This event brought together specialists not only from across Europe but also from around the world, creating a collaborative space to explore the latest research and key developments in patient management – particularly in the area of psychological care.
Paul McLaughlin from the UK presented an insightful session on the lifelong challenges faced by individuals with bleeding disorders.
He highlighted how personality types influence how patients respond to changes and barriers in their care. For instance, some may withdraw completely and become disengaged.
He also emphasized that personal and family experiences – whether positive or negative – with Haemophilia Treatment Centres (HTCs), general practitioners, community services, or other care providers significantly impact how patients interact with healthcare professionals and adhere to treatment plans. Additionally, he discussed how education levels affect patients’ understanding and interpretation of medical information.
One critical factor influencing treatment adherence and attendance at follow-ups is the geographical accessibility of care facilities such as HTCs, hospitals, or GP clinics.
Throughout the conference, comorbidities in an aging population were also discussed—such as cardiovascular disease and reduced joint and muscle strength—further reinforcing the need for holistic, chronic condition-style care for those with bleeding disorders.
Psychological counsellor Christina Burgess, also from the UK, drew attention to the unique needs of women with bleeding disorders, particularly during perimenopause and post-menopause. She described how women often experience unexpected bleeding, stomach cramps, hormone imbalances, and bruising during perimenopause.
While physical symptoms may ease post-menopause, psychological concerns become more prominent. Many women reported feeling a loss of confidence and femininity, along with a diminished sense of self at home and in the workplace. Some even expressed guilt over how menopause-related changes affected intimacy with their partners.
Unfortunately, this valuable insight was based on feedback from fewer than 20 women, as many HTCs currently do not address this area during routine reviews. Christina proposed the formation of women’s support or peer groups, or even creating a dedicated space within clinics where women can connect and share experiences.
She also emphasized the importance of healthcare professionals listening attentively—not just to what is said, but to what may be implied—and asking thoughtful, open-ended questions to better understand these women’s lived experiences.
Anne Juanos, a physiotherapist from Zurich, addressed a topic that’s often overlooked: the care of patients with bleeding disorders living in residential care homes.
Her presentation sparked discussion about the need to adapt our multidisciplinary teams to better support this growing demographic. She encouraged open conversations with older patients about their living options as their independence declines, and asked thought-provoking questions like: ‘Do we have enough resources and information to support bleeding disorder patients in care homes?’ and ‘Should advance care plans include specific considerations for managing haemophilia?’
One of the most impactful initiatives from her Centre was a fall-prevention workshop focused on balance training – a proactive intervention that can benefit not only elderly patients, but also younger adults with joint damage.
Mary Kavanagh, from Children’s Health Ireland and Chair of the EAHAD Nurse Committee, shared a compelling case study on managing two brothers with severe haemophilia A.
Despite having the same health condition and growing up under the same care model, the brothers developed very different perceptions of their illness and responses to treatment. Mary and her team explored how family dynamics and individual personalities influenced their psychological development and engagement with healthcare services.
| Name | David | Ben |
| age | 22yo | 18yo |
| Background Granddad: haemophilia B – poorly managed. Mum: carrier | Good relationship with grandparents and mum. Distanced from dad. | Grew up with domestic violence at home. Constantly seeking approval from dad. Close to mum but not grandparents. |
| Haemophilia B | severe | severe |
| Average bed admission annually | >70 | <10 |
| Joint health score | Significantly poor | low |
| Social life | Active; outgoing; optimistic. | Very closed – only likes music, gaming; negative, disengaged. |
| Medical aid | wheelchair | none |
| HTCs | Actively engaged. Participates in changes and talks. | Disengaged, resistant. Always says ‘it’s David’s HTC’, ‘it’s David’s medical team.’ |
| Treatments | Compliance | not so compliant |
She encouraged professionals to understand each patient’s personal perception of their condition and their expectations of care. She also raised a thought-provoking question: ‘Do we, as health professionals, unconsciously have a ‘favourite’ patient in our HTCs?’ A question that sparked reflection among attendees.
Overall, EAHAD 2025 was a truly inspiring conference. It offered a wealth of valuable sessions that focused on patient care, management, and treatment—particularly from a nursing perspective. Many of the insights shared are directly applicable to our current care models, and I left feeling both motivated and equipped to enhance the support we provide to our patients.
Yushuan (Yoshi) Lin was assisted to attend EAHAD through funding from the Nurses Education Fund, which is administered by HFA.
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