September marks Brain Aneurysm Awareness Month, where organisations, specialists and affected parties work together to raise awareness of the signs, symptoms and risk factors of brain aneurysms, including hereditary or familial brain aneurysms.
It’s currently thought that if a person has a strong family history of brain aneurysms, they are potentially up to three times more likely to have the condition themselves. However, until now there has been limited research and information on the genetic factors and risks of the condition.
People affected by hereditary brain aneurysms often found themselves trying to piece together information from multiple sources, which was difficult to find, understand and navigate. What’s more, people’s experience of living with familial risk has played a limited role in research and has been often hard to find.
HBA Support is a new and growing not-for-profit patient-focused organisation, set up by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm. Discovering the lack of balanced and accessible information available, Rebecca and her sister founded HBA Support to improve the situation for future patients and their families.
HBA Support is committed to improving the care for those impacted by hereditary brain aneurysms: the more they are understood, the better the possible outcomes for patients and their families. Through our new review of the research currently available [LINK], we also see the need for more research into the condition.
We’re looking forward to working hand-in-hand with the medical and patient communities to advocate for improved support, better care and more research into the condition. Keep up to date with news and developments from HBA Support by following us on Twitter and Facebook and by reading our latest blogs.
And because we're at the start of our journey, we want people to get involved and shape our work! If you have been impacted by familial or hereditary brain aneurysms, we need your help. Sharing your story could help other people and improve understanding across the NHS and in the research community. We’re also looking for skilled volunteers to help grow our new organisation and patient representatives to join our patients and stakeholder forum to help guide how we grow and how we achieve our goals. If you or your family have been impacted by hereditary brain aneurysm and you have skills and time to share, please get in touch. Our new and friendly organisation would love to hear from you.