About Hereditary Brain Aneurysms
What is a hereditary brain aneurysm?
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.
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When two or more first-degree relatives (parent, child, or sibling) have proven brain aneurysms, people can be given the diagnosis of ‘familial aneurysm syndrome’, and close family members may be referred for further investigations and screenings. In the medical community, these are often referred to as familial aneurysms.
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What’s the latest NHS advice if I think I may be at risk?
There is limited information and guidance on the NHS website about familial disease. For information, including details about how brain aneurysms are diagnosed and treated, please follow this link.
If you have a strong family history, including two or more first-degree relatives, members of your close family (parents, brothers, and sisters) may also be advised to have an MRA or MRI scan to check for possible aneurysms too.
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If you have any questions or concerns, talk to your GP about your family history and worries. They can then advise on the next steps and access to NHS screening. You may also be referred to a genetic counsellor to discuss your family history and decide whether screening is right. More information about genetic testing is also available on the NHS website.
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NHS Lothian has produced a useful guide for people considering screening for brain aneurysms. To download a pdf of the guide, visit this link: information for adults considering screening for brain aneurysm.pdf (nhslothian.scot)
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If you have any questions that are not listed in our FAQ's please get in touch by emailing david@hbasupport.org.
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Please note that HBA Support is a not-for-profit organisation; we are not medical professionals or qualified healthcare experts.
Our FAQs have been compiled based on our experiences when looking for information related to hereditary brain aneurysms.
For any concerns or worries, please always speak to your GP or a clinical professional.
What are the latest guidelines from NICE?
The latest advice from NICE covers diagnosing and treating an aneurysmal (caused by a ruptured aneurysm) subarachnoid haemorrhage (where an aneurysm has burst and there is bleeding in the space between your brain and the surrounding membrane) and its complications.
It provides recommendations to improve the speed and accuracy of diagnosis and ensure that the most effective treatments are offered, together with guidance on follow-up care and information for people (aged 16 and over) who have had an aneurysmal subarachnoid haemorrhage, their families and carers.
Within the latest draft guide, the authors also recommended additional research to look into familial risk and advice for families.
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More information and the draft guidelines can be found on the NICE website.
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Where can I go for further information?
The organisations below also offer help and information on brain aneurysms and brain injuries.
For any concerns or worries, please always speak to your GP or a clinical professional.
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BASIC - Brain and Spine Injury Centre
Brain and Spine Foundation
Brain Aneurysm Foundation (based in the US)
NeuroLifeNow
Rare Disease UK - What is a rare disease?
SameYou
The Brain Charity