Raising Awareness – Hereditary Brain Aneurysms and the Work of HBA Support

Brain aneurysms are far more common than widely understood, affecting 3.2 percent individuals in the UK, with approximately 2 million people currently living with unruptured aneurysms. In most cases, brain aneurysms are not hereditary, and there is generally only a single case in a family. Occasionally, however, an individual with a brain aneurysm will have other close family members who have also had brain aneurysms.

Around 10-16% of brain aneurysm patients have a parent, sibling, or child who is also affected, highlighting clear hereditary patterns. This equates to around 320,000 people in the UK today living with the risk, fear, and lack of validation for their genetic condition. That sadly means we can estimate that there are a minimum of 170 deaths per year from the familial disease that could have been screened for and prevented – or 3 a week. For the UK charity, Hereditary Brain Aneurysm Support (HBA Support), that’s far too many.

HBA Support’s mission is simple: to raise awareness of this little-known condition, provide support, and advocate for better research and preventative measures to stop these devastating events which have caused tragedy and heartache in thousands of families.

 

Understanding Hereditary Brain Aneurysms

The NHS defines familial or hereditary brain aneurysms as cases where two or more close blood relatives—such as a parent, sibling, or child—have been diagnosed with brain aneurysms. When these patterns emerge in families, it points to a possible genetic component, which in some cases can lead to an increased risk for immediate family members.

For families with a history of brain aneurysms, the risks and impact are generational yet hereditary brain aneurysms remain largely unrecognised by healthcare systems. This lack of awareness means many families are left navigating this condition alone, without access to personalised screening guidelines for the familial condition,  specialist genetic advice, or tailored support.

Awareness is Prevention

While we wait for the genetics of the disease to be fully confirmed by scientists and researchers, brain aneurysms today – sporadic and familial - are detected through techniques like MRI and CT scans. Early diagnosis allows patients and  doctors to identify unruptured aneurysms, giving patients the opportunity for life-saving treatment.

If you have two or more first degree who have had a brain aneurysm - the NHS recommends discussing your family history with your doctor.  Your doctor can help you assess your risk and determine whether screening could be appropriate for you. Early detection is vital—identifying an aneurysm before it ruptures can allow for preventative treatment and significantly reduce the risk of life-changing complications or even death.

The Work We Do

HBA Support was founded to provide better support, care, and information to patients and families affected by hereditary brain aneurysms. It was born from personal tragedy when Rebecca Middleton lost her mother and grandmother to brain aneurysms at young ages - and was diagnosed with a brain aneurysm herself in her 30s. This life-changing experience left her grappling with unanswered questions and a lack of available support. Realising that other families faced similar struggles, Rebecca set out to make a change:

Raise Awareness

Through campaigns, events, and educational resources, such as patient guides and webinars, HBA Support aims to inform people about hereditary brain aneurysms, the support available and guide them through their patient journeys – however that may look for an individual.

Advocate for Research

Hereditary brain aneurysms are still not well understood. We support research projects like the ROAR and ROAR-DNA studies, which are working to uncover the natural history and genetic causes of the condition to develop better screening and treatment options.

Supporting Families

Living with the risk of hereditary brain aneurysms can be overwhelming. We offer a community of support for families, helping them navigate their journey and access the resources they need.

Together, We Can Save Lives

Every week, on average, three families lose loved ones to hereditary brain aneurysms—lives that could have been saved through awareness and preventative action. By raising awareness and supporting vital research, we can stop these tragedies and give families the hope they deserve.

We are proud to work alongside organisations like The Natalie Kate Moss Trust, who share our commitment to creating a world where preventable deaths are a thing of the past. Together, we can ensure that more families know about hereditary brain aneurysms and are supported through their journeys.

For more information visit us at HBA Support, on Facebook: facebook.com/hbasupport or on Instagram: @hba_support