Looking ahead
The Cavernoma Society is proud to have conducted the first ever research into how cavernoma affects relationships.
We know from listening to our members that a diagnosis doesn’t just impact the person with cavernoma – it can touch every part of family life, friendships, and romantic relationships too.
This groundbreaking research, led by Dr Ellie Stankovska, is currently being shared with the wider medical community. The findings will help to shape future NICE guidelines, ensuring doctors and hospitals understand the very real relationship challenges that can follow a diagnosis. The full research will also be published soon.
Alongside this, we are developing a Cavernoma and Relationships leaflet, designed to support couples and families. It will offer practical advice on:
- Communicating more effectively
- Managing emotional challenges together
- Finding ways to strengthen your bond, even in the face of uncertainty
Our hope is that this resource will help couples and families feel less isolated, more understood, and better equipped to support each other.
Because cavernoma doesn’t just affect one person – it affects the people they love too. And together, we can build stronger, more resilient relationships.