JANE PORTNOY
Jane Portnoy is Social Worker – Haemophilia & Other Inherited Bleeding Disorders at the Ronald Sawers Haemophilia Centre, Alfred Health, Melbourne.
One of the standout presentations from the Psychosocial Workshop at the WFH 2026 World Congress focused on adherence.
Co-chairs ~ Silvina Grana, Argentina; Mohsena Olath, Mauritius; Sarah Whittaker, UK
Toolkit 3: Adherence ~ Alice Oliver Rosa Sacramento, Brazil; Amanda Stahl, USA
Alice Oliver, a psychologist from Brazil, and Amanda Stahl, a social worker from the USA, spoke about an aspect of haemophilia care which is increasingly challenging for me. Now that there are fewer acute reminders of a person’s bleeding disorder, such as frequent bleeds and sore joints, it is not surprising that adherence is more difficult. Taking treatment has always been difficult for some, and there are many reasons for this. In the past the reason for treatment was ever present. Now unprovoked bleeds are uncommon, and many of the younger members of the community haven’t experienced these kinds of bleeds.
While there are more treatment options available, staying consistent with treatment is really important and also difficult.
A key first step is understanding what motivates adherence in people with bleeding disorders. These motivators include:
• accepting the diagnosis
• believing prophylaxis is necessary
• and recognising the risk of bleeding if treatment is not taken.
Working out the barriers to adherence is also a powerful tool when you want change. Assisting people with bleeding disorders to self-manage through building their knowledge, practical strategies such as using setting reminders, and staying connected to your Haemophilia Treatment Centre (HTC) can assist in adhering to treatment.
A non-judgemental and open question approach provides a better opportunity to explore this. A question such as ‘In the last month what have been the most common difficulties that you have experienced with taking your treatment?’ will offer the opportunity to discuss these difficulties and gives the message that it is normal to struggle with this. It also gives the person with a bleeding disorder a chance to show self-compassion.
The presentation highlighted several strategies that can support adherence, through increasing confidence with managing self-treatment including patient discussion through groups, psychoeducation, and psychotherapy. Breaking the topic down in this way offered a new perspective on adherence and the practical strategies to support self-management.
In a WGBD (Women and Girls with Bleeding Disorders) stream session during Congress, Lauren Philips, Vice Chair of Haemophilia New Zealand and Jameela Sathar, a haematologist from Malaysia, presented on The invisible impact of chronic fatigue on mental health of WGBD.
Chair ~ Silvina Grana, Argentina
The lived experience ~ Lauren Phillips, New Zealand
The invisible impact effect of chronic fatigue on WGBD mental health ~ Jameela Sathar, Malaysia
Whilst I was very familiar with chronic fatigue as a debilitating condition, I was not aware of its higher prevalence in women and girls with bleeding disorders. In addition, there is a link to mental health. Both speakers addressed the invisibility aspect of chronic fatigue, and the difficulties for women suffering with it.
Dr Sathar explained the reason for the low recognition of the role of iron levels in menstruating women: she said that the reference level of anaemia established by the World Health Organisation in 1968 discriminates on a gender basis and is inadequate and hence women have not been treated adequately for low iron levels caused by heavy menstrual bleeding between menarche and menopause.
The result is that women have not received optimum treatment for low iron levels, and even a small drop in levels can cause significant debility for women and girls with bleeding disorders. She referred to an article by Merz et al, which explains this well in diagrams. 1 (see article 1 in the list of references)
Dr Sathar talked about the many symptoms of iron deficiency and low ferritin levels:
There is a strong association between iron deficiency and depression and cognitive dysfunction. Dr Sathar said that this is due to iron’s important role along with oxygen and tetrahydrobiopterin in the dopamine and noradrenaline pathways and the serotonin pathway, which are nervous system connections affecting normal cognitive processes.3
Hence, Dr Sathar said that all women and girls with bleeding disorders who are menstruating should have their iron levels assessed, and then she addressed the difficulties with taking iron supplements. She suggested taking iron supplements on alternate days as a successful way to dose women and minimise the side effects commonly experience by women taking iron supplements. In addition, she emphasized the importance of prompt bleeding control, with tranexamic acid and seeking early treatment. Dr Sathar went on to talk about various treatments and strategies to manage iron levels in women and girls with bleeding disorders.
Dr Sathar said that iron deficiency is the most important cause of chronic fatigue in women and girls with bleeding disorders. The treatment of low iron levels is more important when it is understood in the context of the higher prevalence of low iron levels in women and girls with bleeding disorders and the strong link between low iron levels and depression. Early treatment also prevents much of the long-term harm caused by chronic fatigue.
Lauren Philips spoke candidly about her experience living with chronic fatigue and the profound impact it has had on both her life and her family. The condition brought with it a wide range of physical and psychological symptoms, making day-to-day life unpredictable and often overwhelming. Her path forward was far from linear – marked by small gains followed by setbacks – and requiring persistence, patience, and resilience.
A significant part of Ms Philips’ journey involved learning to accept her limitations and letting go of expectations so that she was able to opt out of activities in a more proactive way when she could no longer manage. This process allowed Ms Philips to regain a sense of control of her health and mental health.
Ms Philips highlighted four key areas in which chronic fatigue can affect mental health and quoted from MIASA Malaysia (Mental Illness Awareness & Support Association):
These are:
Stress and anxiety: Chronic illness often involves managing symptoms and navigating healthcare systems, leading to increased stress and anxiety.
Depression and mood swings: The physical limitations and emotional burden of chronic illness can contribute to feelings of sadness, hopelessness, and mood swings.
Sleep disturbances: Pain, discomfort, and medication side effects can interfere with sleep, further impacting mood and energy levels.
Social isolation: Limitations on social interactions due to health problems lead to withdrawal from friends and family. The sense of being misunderstood or unsupported can worsen loneliness and depression.4
Despite these challenges, Lauren has found her own way forward. She has learned to live with chronic fatigue while staying true to her personal priorities. She spoke openly about the difficult periods she has faced, as well as the determination that has carried her through them. Through gradual progress and perseverance, she has been able to move forward in her life. Her resilience and determination were deeply inspiring.
Jane Portnoy is a member of the WFH Psychosocial Committee and was assisted by funding from WFH to attend the WFH 2026 World Congress.
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