Navigating the World of Brain Aneurysms
If you've found your way to this post, you're likely grappling with a slew of questions and worries about brain aneurysms and their hereditary implications. The idea that brain aneurysms might run in the family can be distressing, and we're here to offer guidance and support if this is something on your mind.
Let's start by acknowledging that brain aneurysms often remain hidden, causing no symptoms for a substantial part of our lives. They're like silent guests, making it challenging to discern their hereditary nature.
Our own deep dive into the research, which we call the Targeted Literature Review, adds even more to the puzzle. Back in 2005, a study found 7,221 cases of ruptured brain aneurysms each year in the UK*. But, since our population has grown by 8 million since then, we need fresher information. And importantly, in all this data, no one is counting the number of people or families where brain aneurysms seem to have a genetic or familial pattern.
* Rivero-Arias O, Gray A, Wolstenholme J. Burden of disease and costs of aneurysmal subarachnoid haemorrhage (aSAH) in the United Kingdom. Cost Eff Resour Alloc 2010;8:6.
Making the Genetic Link
With so many uncertainties, what do we know for sure? Well, while many instances of brain aneurysms and ruptures are sporadic, having a family history of aneurysms does increase the chances of having one yourself.
Researchers looking into familial (or hereditary) brain aneurysms have found more than 30 genes linked to increasing the susceptibility to brain aneurysm development in families. No single gene or multiple genes have been confirmed, but despite this lack of 'concrete' evidence, most scientists are confident that there is a genetic cause and that a breakthrough will come with more research.
While we are waiting for the genetic breakthrough, the condition is often labelled 'familial' by clinicians. This means it's proven to be hereditary and runs through generations, often through the maternal side of the family. Once we have a confirmed and accepted list of disease-causing gene variations, it will be classified as a 'genetic' condition.
Thinking About Screening
Notably, if two or more close family members have had an aneurysm, the NHS suggests considering screening as a way to be proactive. This screening can give you important information about your personal risk, and help doctors figure out what to do if they find an aneurysm.
Of course, though, screening personal decisions is one that you should make based on your comfort level. Some people choose not to undergo screening due to the anxiety it might provoke. Having discussions with experts and genetic counsellors can help you make an informed choice tailored to your needs.
We’re Here to Help
Hereditary Brain Aneurysm Support (HBA Support) is a patient-focused group that was created in 2020 by Rebecca and Emma Middleton, sisters who have had personal experiences with brain aneurysms. Our goal is to provide support and knowledge for people who are dealing with brain aneurysms that run in families.
Our mission is clear: we want to support you and your loved ones, raise awareness about this rare disease, and push for better care, more support and more research. We work closely with the patient community and with researchers and experts too. As we walk this journey together, we're here to provide as much information as we can and offer a helping hand as you navigate this worrying time.
Need to know more? If you're affected or have questions, we're here for you. Don't hesitate to get in touch.
Contact David Salmon, Community Manager, david@hbasupport.org