Families living with familial (hereditary) brain aneurysms: Lily George’s research
- HBA Support
- 35 minutes ago
- 3 min read
We believe real progress starts by listening: to the people and families living with conditions that science is still trying to understand.
When Lily George, MSc Genetic and Genomic Counselling at Cardiff University, asked us to support her research study exploring what it means to live with familial intracranial aneurysms (FIAs), a hereditary form of brain aneurysm that can affect generations of the same family, we were happy to be involved.
Why this research matters - Familial intracranial aneurysms
Familial intracranial aneurysms (FIAs), remain poorly understood, with no consistent UK screening guidelines, leaving many people searching for answers after their own or a loved one’s diagnosis, at what is already an incredibly worrying time. As the condition is inherited, the effects don’t stop with one person’s diagnosis. They echo through generations, shaping how families relate to one another, how they make choices, and how they live with uncertainty.
That uncertainty is something Rebecca Middleton, our founder, knows all too well. She lost both her mother and grandmother to brain aneurysms and later discovered she had one herself. “It changes everything,” Rebecca says. “You start to live with questions that don’t have answers, about your own future and those you love. And yet there’s so little guidance or understanding out there. That’s why I founded HBA Support, to make sure no family feels as lost or alone as we did.”
What Lily set out to do
Lily’s qualitative study, Exploring the Experiences of Families Following a Diagnosis of Familial Intracranial Aneurysms, set out to give voice to families like Rebecca’s.
She interviewed people who were either living with an FIA themselves or supporting a partner with the condition, capturing how hereditary risk shapes everyday life. Her findings show how powerful lived experience can be in highlighting what current research and care still overlook.
Psychosocial impactParticipants described fear, loss, and the uncertainty of not knowing what the future might hold. Many spoke about living with a constant awareness of risk that coloured everyday life. This ongoing emotional strain often shaped relationships, work, and daily routines. |
Family communication and dynamicsWhile some families spoke openly about their risk, others chose not to discuss it regularly. Nevertheless, all participants reported that their immediate family were aware of their genetic risk, and it was not hidden in the family. For some, conversations about screening and genetic risk brought families closer together; for others, they revealed tension, distance, or differing ways of coping. |
Support from health and social careEvery participant described a sense of unmet need. Families struggled to find reliable information, guidance, or emotional support, and many said they simply wanted someone to talk to who truly understood what they were going through. Together, these stories reveal not only the emotional weight of inherited risk, but also the strength of families doing their best to care for one another in the unknown and searching for a reliable source of information and support. |
Listening to patients to shape the future of familial (hereditary) brain aneurysms
This work highlights the deep and often invisible emotional toll of FIAs, and how much more support families affected by them require.
“I am incredibly grateful to the participants who gave up their time to support this research and to share their story with me,” Lily explains. “This study demonstrates the significant impact FIAs have on families and I hope that these findings can be used to help HBA Support towards achieving their aim of improving the gaps that exist in the care and understanding today”
At HBA Support, we are committed to turning that listening into lasting change, working with families, clinicians and policymakers to close the evidence gap. And by supporting early-career researchers and genetic counsellors like Lily, we’re helping to build a new generation of professionals who combine scientific understanding with deep compassion.
“We’re incredibly proud to support emerging talent,” adds Rebecca Middleton. “Researchers like Lily are helping us see what’s been missing — and showing how the future of care must be built around patients, not just pathology.”
