Rebecca Middleton, HBA Support's founder and CEO shares how our organisation came to be.
"Six years ago, I was facing brain surgery to address a condition that had already claimed the lives of my grandmother and mother. I had a right MCA brain aneurysm which, after years of careful monitoring, had grown to a size that posed a serious risk of sudden rupture. Unlike my family members before me, I was given a chance to repair the aneurysm and change the tragic narrative that had shadowed my family for at least three generations.
The Shadow of Fear
"The weight of this diagnosis was overwhelming. In my family, a brain aneurysm meant death. There was no room for hope, only heartache and fear. As I sat in the neurosurgeon's office, hearing the confirmation of my worst fears, I felt an all-encompassing terror. I couldn't shake the images of my mother and grandmother, who had their lives cut short by this silent killer.
"The worst part was the isolation. I was scared that my story would end the same way because I had nothing to balance the darkness. When I went looking for information about my condition, I found very little. There was a massive lack of balanced information about brain aneurysms as a condition one could live with and manage. There seemed little hope, no examples of people who had survived and gone on to live fulfilling lives. The darkness seemed impenetrable, and I felt completely alone in my struggle.
A New Purpose
"But my surgery was successful, and I was given a second chance at life. The relief and gratitude I felt were indescribable. But with that second chance came a responsibility. I knew I had to use my experience to bring light to others who were walking the same dark path I had.
"Hereditary Brain Aneurysm Support (HBA Support) started as a personal mission but quickly grew into a community of support and information for those affected by hereditary brain aneurysms and their families. We aimed to provide easy-to-understand, accessible information and creating a network of hope and encouragement. We gave a voice to a silent disease that no one was talking about, and showed people that treatment could be successful, and it’s possible to live a healthy life with hereditary brain aneurysms, albeit with regular checking, adjustments and consultations.
"Our mission at HBA Support is twofold: to provide clear, accessible information about hereditary brain aneurysms and foster a community of support and hope - and build a better understanding of this disease, expanding our medical and scientific knowledge. We work to ensure that no one has to face this condition alone. We share stories of survival and resilience, highlight the latest research, and provide resources for patients and their families.
Shining a Light on Awareness
"This September, in line with Brain Aneurysm Awareness month's theme, we are committed to bringing hope to those affected by hereditary brain aneurysms. We aim to provide balanced information and spotlight the exciting research on the horizon, including the promising ROAR Study. Our goal is to shift the narrative from one of heartache to hope.
"The ROAR Study, among other research initiatives, represents a beacon of opportunity. It is part of our effort to shine a spotlight on the advancements being made in understanding and treating hereditary brain aneurysms. By highlighting these studies, we aim to offer a balanced view of the condition, showcasing not just the risks but also the possibilities for treatment and management.
A Personal Journey
"Looking back at my journey, I see that day of my surgery as the first day of HBA Support. From the depths of fear and uncertainty, a life-changing opportunity emerged. It has been an incredible journey of transformation and hope, not just for me, but for everyone who has become a part of our community.
"The journey has not been easy. There have been moments of doubt and fear, but they have been far outweighed by the joy of seeing others find hope and support through HBA Support. Every story of survival, every message of thanks, and every new piece of research fuels our commitment to this cause.
"Let’s continue to change the narrative together. Your support, whether through sharing information, participating in our events, or simply spreading the word, makes a huge difference.
Resources and support
If you have any health concerns related to the topics in this article, please speak to your GP or a clinical professional.
Visit our Support page for free resources for people recently diagnosed with an hereditary brain aneurysm:
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