The impact of vanishing white matter on unaffected family members
Mothers and partners indicate a significant and consistent reduction in their quality of life on standardized questionnaires. Qualitative interviews revealed in-depth details of VWM's impact on all family members. Improved healthcare communication, symptom management resources, and support networks are essential for alleviating VWM's impact on families. This study emphasizes the importance of tailored approaches to supporting family members of VWM patients and enhancing their quality of life.
Authors
- Geneviève Bernard (ORCID: https://orcid.org/0000-0002-9634-2966)
- Adeline Vanderver (ORCID: https://orcid.org/0000-0002-6290-6751)
- Irene van Beelen
- Marjo S. van der Knaap (ORCID: https://orcid.org/0000-0001-8912-0954)
- Francesco Gavazzi (ORCID: https://orcid.org/0000-0002-4908-8395)
- Ingeborg Krägeloh‐Mann (ORCID: https://orcid.org/0000-0003-4599-1373)
- Daphne H. Schoenmakers (ORCID: https://orcid.org/0000-0003-1601-7379)
- Alexandra Chapleau (ORCID: https://orcid.org/0000-0002-4741-1355)
- Romy J. van Voorst (ORCID: https://orcid.org/0009-0003-7309-9582)
Institutions
- Children's Hospital of Philadelphia (US)
- McGill University Health Centre (CA)
- Emma Kinderziekenhuis (NL)
- Amsterdam Neuroscience (NL)
- University Children's Hospital Tübingen (DE)
- Amsterdam University Medical Centers (NL)
- Cognitive Research (United States) (US)
- McGill University (CA)
- University of Pennsylvania (US)
- Vrije Universiteit Amsterdam (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-26
- DOI
- https://doi.org/10.1186/s13023-025-03987-8
- Citations
- 2
- Primary Topic
- Employment and Welfare Studies
- Type
- article
- Field-Weighted Citation Impact
- 5.63
Funders
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek