In April 2022, Dawn Roberts, a 63-year-old Optometrist from West Yorkshire, found out that she has a 9mm saccular brain aneurysm. She underwent CT screening after her daughter Carmel suffered a subarachnoid haemorrhage (SAH) at the young age of 28 which she fortunately survived. Dawn also has a sibling with a brain aneurysm, and doctors believe that her condition is hereditary.
Looking back on her diagnosis, Dawn comments: “When I first found out, I was consumed by worry and anxiety. It has been devastating to see my daughter go through such a horrendous time, and it’s put enormous strain on the whole family.”
However, doctors were able to reassure Dawn that the chance of her aneurysm rupturing is relatively small (at around five to 10 per cent during her lifetime). And for Dawn, the future is hopeful. She is awaiting endovascular surgery where a state-of-the-art system called Contour will target the neck of her aneurysm and prevent it from rupturing.
She comments: “It’s great that I’ve been able to find out about my aneurysm before it caused any health issues. For me, understanding the treatment options available has been invaluable in helping me to come to terms with my diagnosis and move forward with life.”
For Dawn, screening was a logical decision. But screening isn’t for everyone and is a personal choice. As Dawn recounts: “While a diagnosis was really important for me, my son, who is 32, and has been advised to have a scan, isn’t sure if he wants to know. He feels that it could make him more anxious to go through that process, particularly if the medics decided to use a ‘watch and wait’ approach, which is apparently common for small aneurysms. Everyone has their reasons for knowing or not knowing."
Dawn remembers that researching the condition was frustrating – with little information available on hereditary brain aneurysms. She says: “I avoid ‘Dr Google‘ because of my clinical background, so I tried to seek out reputable and expert research. However, while there were lots of websites out there talking about sporadic brain aneurysms which had ruptured, nothing really felt relatable for me with a hereditary condition.”
Dawn says: “In terms of peer support, the Facebook groups I belong to have been useful in some respects, like telling me what to expect from surgery.” However, Dawn warns that there is a lot of medical misinformation on peer-to-peer forums, and that reputable resources for patients and their families are much-needed.
She also calls for clearer treatment pathways for people affected by hereditary brain aneurysms, having been referred to several different specialists, feeling confused about the options available to her and noting the differing advice provided from disparate sources.
“On diagnosis, I was left feeling frustrated and alone,” Dawn says. “I didn’t know what would happen next and it was a frightening experience where I felt I had to fight for a clear plan. Clinicians are experts on what to do with an aneurysm, but not how to live with one.
While receiving plenty of support from her work colleagues, Dawn’s diagnosis and forthcoming treatment has prompted her to re-evaluate her life. Dawn says: “I’ve cut back on work and used my pension pots to supplement my income, hoping to take life a bit easier and make the most of time in the garden, with my much-loved animals and with family and friends.”
It’s also made her more organised when it comes to her future. “While the chance of dying from my brain aneurysm is small, it’s been reassuring for me to ensure my affairs are in order. Having the hereditary brain aneurysm diagnosis has helped me have these difficult conversations and to plan for the future.”
Dawn says that anyone suspecting they might be suffering from the familial condition is likely to have to advocate for their own treatment. With resources stretched across the NHS, Dawn says: “you might have to ask, and ask again, for screening options – but it’s absolutely worth it in the end.”
Dawn continued: “I would like to find out more about possible future genetic screening, it could help you manage how you live your life if you have the condition, and the family can be prepared.”
“We also need clearer information on what to do if you think there is a family link, and you have a family history of aneurysms. Having an aneurysm isn’t a death sentence, there are treatment options and we need more information on how to live well and positively with aneurysms”.
Today Dawn is keen to share her story and work with HBA Support so that other people affected by this condition know where to turn for support - and to help others understand what they might experience after diagnosis.