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About Hereditary Brain Aneurysms

What is a hereditary brain aneurysm?

 

Finding out that you or someone you love may be at risk for a brain aneurysm can feel overwhelming. Whether it’s a recent diagnosis or a family history that’s raised concern, we're here to offer clear, straightforward information—so you can feel more informed, more in control, and better supported every step of the way. Discovering that you or a loved one has a brain aneurysm, or learning about a familial risk, can be overwhelming. This page provides clear and concise information to help you navigate this complex topic.

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Who is at risk of a brain aneurysm?

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​​Aneurysms may develop due to a combination of genetic and lifestyle factors:

  • High blood pressure (hypertension)

  • Smoking

  • Family history of brain aneurysms (hereditary aneurysms)

  • Age over 40

  • Female (women are more prone)

  • Connective tissue disorders (e.g., Ehlers-Danlos syndrome, polycystic kidney disease)

  • Drug use (especially stimulants like cocaine)

  • Heavy alcohol consumption

  • Head injury or trauma​

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Certain lifestyle factors, like smoking, a poor diet, not getting enough sleep, or feeling constantly stressed, can gently increase the risk of developing an aneurysm over time. Making small, positive changes in these areas can help support your overall brain and heart health.

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It’s important to know that many people live with a brain aneurysm for years without any symptoms, some people never know they have one. They’re often found by accident during scans or tests for something completely unrelated and never cause any problems.

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Are brain aneurysms hereditary?

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Most brain aneurysms happen at random, called sporadic aneurysms, with 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. Research indicates that 1 in 8 people who have an aneurysm has the familial or hereditary condition.

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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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Genetic conditions linked to aneurysms
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Some genetic disorders can predispose individuals to aneurysms, including:

  • Autosomal Dominant Polycystic Kidney Disease (ADPKD): A genetic disorder causing numerous cysts in the kidneys.

  • Ehlers-Danlos Syndrome (Types II and IV): Connective tissue disorders that can weaken blood vessel walls.

  • Marfan Syndrome: A disorder affecting connective tissue, potentially leading to vascular complications.

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I think I may be at hereditary risk? How can I get a genetic test for brain aneurysms?

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It's a great question - there is no genetic test as yet unfortunately, there are research projects underway, like the ROAR-DNA Study that will hopefully get us closer to a genetic test. Until then screening is done through brain scans via a MRA (Magnetic Resonance Angiography) or MRI (Magnetic Resonance Imaging) scan.

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Who can get screened for hereditary brain aneurysms?

 

​According to the NICE guidelines, hereditary (familial) aneurysms occur when two or more first-degree relatives ( (parents, brothers, and sisters) have had a brain haemorrhage from an aneurysm or have diagnosed unruptured aneurysm/s. In these cases, screening may be offered through an MRA  (Magnetic Resonance Angiography or Angiogram) or MRI (Magnetic Resonance Imaging) brain scan to check for possible aneurysms too.

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These are however just guidelines and every Neuro-centre and team have their own interpretation. Also, every person and family is different and screening is a very personal choice, so there is no one size fits all answer unfortunately.

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Even if you don’t meet these criteria but are worried about a family pattern, we would usually advise you still to 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. 

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If you have been diagnosed with a brain aneurysm and are worried about your family then your neurosurgeon or neuro vascular specialist will be able to offer advice tailored to your families personal situation and history and guide you on appropriate next steps.

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If you are still worried but not able to access screening, you are also entitled to a second opinion and of course there are private screening options, but we would always advise for you to work with your current medical teams where possible as they understand your history and family story.

 

We have a few guides that might be able to help you:

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What’s the latest NHS advice if I think I may be at risk of a hereditary brain aneurysm?

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There is limited information and guidance on the NHS website about screening for the hereditary (familial) disease. There is more information about how brain aneurysms are diagnosed and treated.

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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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What are the latest guidelines for screening and care of people with brain aneurysms from NICE?


The latest advice from NICE (National Institute for Health and Care Excellence) 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 of a brain aneurysm 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 guide, the authors also recommended additional research to look into familial risk and advice for families.

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Read the NICE Guidelines: Subarachnoid haemorrhage caused by a ruptured aneurysm: diagnosis and management

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Frequently 
Asked Questions

Common questions and answers about hereditary brain aneurysms. 

If you have any questions that are not listed in our FAQ's please get in touch by emailing support@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.

Webinars

Webinar of How to live with the anxiety of having a brain aneurysm
Webinar about the risk of rupture of brain aneursym study and the roar study
webinar about familial brain aneurysms or hereditary brain aneursms and the genetic links
Webinar discussing hereditary brain aneurysms

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)

Brain Injury Matters 

Brain Injury Foundation

Headway

Medtronic

NeuroLifeNow
Rare Disease UK - What is a rare disease?
SameYou
The Brain Charity

The Gene People

Different Strokes

Contact us by email - support@hbasupport.org

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Hereditary Brain Aneurysm Support (HBA Support) is a charity registered in England and Wales. Registered Charity Number 1210213

Our registered address is HBA Support, The Old Police Station, South Street, Ashby de la Zouch, Leicestershire, LE65 1BR

 

Hereditary Brain Aneurysm Support provides information and support for individuals and families affected by brain aneurysms with a proven or suspected hereditary link. We also aim to raise awareness and help people understand brain aneurysms better. 

 

Note: This information is intended for educational purposes and should not replace professional medical advice. Always consult a healthcare professional for personalised guidance.

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For site issues, please email support@hbasupport.org

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