17 September 2026
Six adults. Six countries. Six different journeys with spina bifida and hydrocephalus.
What does it mean to grow older with spina bifida and/or hydrocephalus (SBH)? There is no single answer.
For the first time, the IF is bringing together personal stories from adults living with SBH around the world in a new publication: Living with SBH: Stories of Lived Experience.
Developed through the IF International Adult Working Group SBH, the catalogue brings together the experiences of six adults from six countries, offering personal perspectives on what it means to navigate adulthood and grow older with a lifelong disability. Their stories are individual and do not represent everyone living with SBH. Together, however, they offer valuable insight into the realities, challenges, achievements and aspirations that can shape adult life with SBH.
Six voices, different paths
The contributors reflect different backgrounds, experiences and perspectives. Their stories explore aspects of life that extend far beyond medical care, including health, independence, employment, identity, mental wellbeing, relationships, community and advocacy.
Their experiences also show the different ways people adapt, find support, build independence and advocate for themselves and others.
Why share these experiences?
The catalogue is more than a collection of personal stories. It is an invitation to listen. Lived experience can help us understand the realities behind the issues faced by adults with SBH, including barriers that may not be visible, assumptions that can limit opportunities, and the importance of having the right support to participate fully in life.
By sharing these experiences, IF hopes to strengthen understanding, support advocacy and encourage more inclusive and responsive systems of care and support.
The stories also highlight the importance of seeing the whole person, not just the disability, recognising people’s identities, choices, relationships, ambitions and contributions throughout their lives.
A publication by and for the SBH community
This catalogue was made possible by the openness of the six contributors who chose to share their experiences.
IF warmly thanks Vanessa Caraveo (USA), Stijn Calders (Belgium), Su Xiao Vin (Malaysia), Catherine Naknyiga (Uganda), Gerry Maguire (Ireland), and Kevin Murray (Scotland) for sharing their stories. Their contributions help raise awareness, strengthen advocacy and encourage peer support for adults living with SBH.
We also thank the following IF Member Associations for their support and collaboration:
- Spina Bifida Association of America (SBAA)
- Vlaamse Vereniging voor Spina Bifida en Hydrocephalus vzw (VSH)
- Spina Bifida Association Malaysia (SIBIAM)
- Spina Bifida and Hydrocephalus Association of Uganda (SHA-U)
- Spina Bifida and Hydrocephalus Ireland (SBHI)
- Spina Bifida Hydrocephalus Scotland (SBHS)
Read the catalogue
We invite you to take the time to discover their stories, share the publication with your networks and use it as a starting point for conversations about adult life, wellbeing, inclusion and support for people living with SBH.
READ LIVING WITH SBH: STORIES OF LIVED EXPERIENCE
Continuing the conversation
The publication is being introduced as part of IF’s Mental Health & Lived Experiences Campaign 2026, connecting the International Day of Older Persons on 1 October with World Mental Health Day on 10 October. The six stories provide an important starting point for a wider conversation about mental health and wellbeing across the lifespan.
As part of the campaign, IF will host a global webinar:
Connected Across the Lifespan: Mental Health and Wellbeing in the Global SBH Community
8 October 2026 · 14:00 Brussels time · Online
The conversation will bring together different voices and perspectives from the global SBH community to explore mental health, wellbeing and lived experience across the lifespan.
