Ports, pressure and panic — Coping with haemophilia treatment challenges

Haemcast’s special series in collaboration with Local families with bleeding disorders continues with a reflection on what makes the parents of children with haemophilia feel supported. Mums Melissa and Alex both acknowledge the importance of the ongoing support they have from their sons’ haemophilia care teams. However, they also describe times when they’ve felt unsupported by medical staff due to not being listened to and feeling unheard, and the resulting stress and anxiety. Both mums suggest potential solutions to the issues they’ve experienced with their sons’ haemophilia care. They also speak about the role that non-medical support from members of the Local families group has played – and continues to play – in their haemophilia journeys.For more information on Local families with bleeding disorders, visit www.bleeding-disorders.co.uk CREDITSParticipants: Melissa Lloyd, Alex AkriminiInterviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we look at some of the challenges that can arise when treating a child with haemophilia.Getting used to administering treatment can be challenging, particularly in the early days. Until recently, most haemophilia treatments have been given intravenously, which is a challenge in itself, but other issues can arise too. In ‘Ports, pressure and panic’, we speak with three parents of children with haemophilia about treatment-related challenges they’ve experienced. They discuss how they’ve managed and overcome these challenges, and the impact on them as parents.If you would like to find out more about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk CREDITSParticipants: Sam Keeley, Nicola East, Andrew EastInterviewer: Kathryn JennerMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we look at some of the challenges that can arise when treating a child with haemophilia.Getting used to administering treatment can be challenging, particularly in the early days. Until recently, most haemophilia treatments have been given intravenously, which is a challenge in itself, but other issues can arise too. In ‘Ports, pressure and panic’, we speak with three parents of children with haemophilia about treatment-related challenges they’ve experienced. They discuss how they’ve managed and overcome these challenges, and the impact on them as parents. For more information on Local families with bleeding disorders, visit www.bleeding-disorders.co.uk CREDITSParticipants: Sam Keeley, Nicola East, Andrew EastInterviewer: Kathryn JennerMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

The next in our special collaboration between Haemcast and Local families with bleeding disorders focuses on the partners of people who live with haemophilia and von Willebrand disease. Anya, Emma and Tom agree that while bleeding disorders are significant in their lives, they don’t define their partners’ identities or their relationships.  They talk about teamwork and living in the moment, and they share a pride in their partners’ resilience and advocacy. But they also note a lack of support and awareness for partners themselves, particularly when it comes to medical issues. For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk. CREDITSParticipants: Anya Gorman, Emma Drake, Tom CharlesInterviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

When making choices about treatment for a bleeding disorder, for a child or for yourself, what matters most? In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we speak with parents about the considerations that come into play when making decisions about haemophilia treatments. They share their treatment stories, expectations and anxieties around treatment changes, and how easy it is to access new or different treatments.For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk  CREDITSParticipants: Gemma Gardner, Nicola Green, Bonnie CharlesInterviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

When it comes to managing family life with a child who has a bleeding disorder, parents aren’t just caregivers – they’re organisers, advocates and educators. Alongside managing their child’s condition, they have to help them understand it too.In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, parents discuss how they go about talking to their child about their bleeding disorder – helping them understand where it comes from, what it means for their day-to-day lives, and why their treatment is important.For more information about Local families with bleeding disorders, visit ⁠www.bleeding-disorders.co.uk CREDITSParticipants: Hannah Brunning, Mark Salmen, Jackie PerkinsInterviewer: Kathryn JennerMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

The first in a special Haemcast series in collaboration with Local families with bleeding disorders, exploring aspects of family life.In this episode, members of Local families with bleeding disorders discuss the online workshops that helped them explore their experiences and express their hopes, expectations and worries about the bleeding disorders that impact their families. They are joined by community advocate Rich Gorman, and poet and arts practitioner Dawn Gorman (no relation).The poetry collection resulting from the workshops, Bleeding and Belonging, is available online as an eBook.For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.ukCREDITS:Participants: Dr Rich Gorman, Dawn Gorman, Lisa Steadman, Hannah Brunning, Marie Dolton, Alex Akrimi, Claire BrownInterviewers: Kathryn Jenner, Dr Kate KhairMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

Morris Okello lives in Northern Uganda. In this episode of Haemcast, he tells Dr Kate about the childhood experiences that eventually led to him being diagnosed with haemophilia B. As well as describing his own journey towards becoming an advocate for people with haemophilia in Uganda, Morris highlights the work of the Ugandan Haemophilia Society in raising awareness, improving rates of diagnosis, and providing access to treatment and care. CREDITS:Speaker: Morris Okello GriffinInterviewer: Dr Kate KhairMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠bensound.com⁠

Dance teacher and Haemophilia Society trustee Helen Tate talks with Haemnet's Dr Kate Khair about living with Factor V deficiency, a rare bleeding disorder that affects around one in a million people.Helen leads an active life despite her condition and is a passionate advocate for the rare bleeding disorders community. She discusses diagnosis, coping with bleeds when treatment options are limited, and what she thinks needs to change to improve life for everyone who lives with a rare bleeding disorder.CREDITS:Speaker: Helen TateInterviewer: Dr Kate KhairMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠bensound.com⁠

Following our six-part mini-series 'Reflections on a life with severe haemophilia', with Terence O'Rourke, Haemnet's Dr Kate Khair considers some of the things that have changed in haemophilia care during Terence's lifetime – and some of the  things that perhaps haven't.Kate discusses the importance of remembering times when haemophilia treatment wasn't so readily available, getting a diagnosis, treatment decisions, feeling isolated, and the importance of support and understanding.CREDITS:Speaker: Dr Kate KhairInterviewer: Kathryn JennerMusic: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠bensound.com⁠