Dr Richard Gorman, Assistant Professor in Ethics and Social Science at Brighton and Sussex Medical School, received funding from the Centre for Arts and Wellbeing at the University of Brighton to work with people affected by bleeding disorders.
Bleeding disorders, such as haemophilia and von Willebrand disease, are inherited conditions with wide-ranging impacts on health, care, and family life. Living with a bleeding disorder often means engaging with regular medical care, planning around risks, and passing on knowledge and experience across generations. For many, the impact is felt in everyday choices, about work, school, sport, travel, and the responsibilities families share.
These personal experiences are part of a wider community story, shaped by history and by rapid change in treatment. The recent Infected Blood Inquiry has prompted recollections of trauma, social exclusion, and injustice for many families, though also hopes for resolution, restitution, and acknowledgement. Simultaneously, treatment landscapes are rapidly changing, opening new prospects as the decades-long promise of gene therapy edges closer to reality – though bringing with it new social, ethical, and therapeutic challenges for people with bleeding disorders to navigate too.
Rich worked with community partners Local Families with Bleeding Disorders, a charity that offers support and understanding about what it is like to live with a bleeding disorder, and Dawn Gorman an award-winning poet and arts practitioner (Dawn and Rich aren’t related, despite their similar surnames!). Together, they designed a series of online workshops that used poetry to try and understand more about the hopes, expectations, and worries of people affected by bleeding disorders.
The course provided participants with structured opportunities to use creative writing to reflect on and articulate their experiences with bleeding disorders. Sessions introduced a variety of poetic techniques and created space for participants to experiment with different forms of writing. Guidance and feedback supported the development of individual pieces, enabling participants to shape their personal reflections into completed poems.
Lisa Steadman, the Chair of Local Families with Bleeding Disorders has written this powerful blog about the experience of the poetry project, describing it as an “an unforgettable and empowering experience that we shall treasure”.
The poems are currently being collated and designed into a digital collection which will be made available and accessible online to support a wider public understanding of what living with a bleeding disorder can be like. We will also distribute it to healthcare professionals working in the worlds of bleeding disorders to use the collection to equip clinical stakeholders with better understandings of emotional, social, and cultural aspects affecting families, supporting efforts towards more sensitive, patient-centred care.
The group will also be getting together in the autumn to record a podcast for the Haemcast series to talk about the issues faced by families living with bleeding disorders and share some of the poems that were written, as well as taking part in online radio show The Poetry Place.
An academic article is also planned, to be published in the Journal of Haemophilia Practice, describing the processes, methods, and experiences of working poetically with people with bleeding disorders. It is hoped that this will contribute to building capacity for further arts-based work in a bleeding disorders context, and open perspectives to different forms of knowledge – lived and creative, alongside clinical and scientific – in this space.
The poems written during the sessions give voice to the emotions, uncertainties, and resilience that shape life with bleeding disorders. They open windows onto experiences that are often absent from clinical accounts by offering personal, emotive, and deeply human perspectives. Poetry acts as a way of knowing, holding clinical knowledge alongside the textures of parenting, risk, and support. The following poem, written by Alex Akrimi, one of the workshop participants, reflects on inheritance, identity, and on the ways families make sense of bleeding disorders through daily acts of reassurance.
Inheritance
When I hold him, this is what I think:
my body made him,
and my body failed him.
Haemophilia –
no echo of it behind me,
no whispered warnings in the bloodline.
No grandfather’s limp,
no uncle’s silence.
We were OK
or so we thought.
And then came the news
clinical and sharp,
like a door slammed in a quiet house.
Genetic mutation –
as if randomness is less cruel
than inheritance.
He was perfect until he bled.
I didn’t know my body
could write tragedy
into the very instructions
for a life.
No history –
just the future now,
mapped in infusions,
bruises blooming like unanswered questions.
And I still count it,
the time between fall and scream:
the leap from the sofa,
the stumble on the gravel.
He trusts the ground.
I’ve learned not to.
I watch joy with suspicion.
What haunts me most
is that there’s no name to blame.
No family tale.
No myth to fold into meaning.
Only a single cell
that veered off course –
and made a home in him.
Still, I carry him.
Still, I whisper safety into his sleep.
Still, I tell him
his blood is not broken,
just rare.
But in the dark,
I curse the silence it came from,
the mystery that chose him
without reason,
without memory,
without mercy.
– Alex Akrimi
