Newly diagnosed
Guides for the first weeks: building your care team, what to ask, and how to think about telling family.
Living with CADASIL
You are not alone.
CADASIL touches generations — patients, partners, parents, and children. We exist to make sure no one has to figure it out by themselves.
A starting point
If you are newly diagnosed.
A new CADASIL diagnosis is a lot to absorb. Take it slowly. The first weeks matter less than the first year.
- Build a CADASIL-aware care team — neurology, primary care, genetic counselling, mental health
- Get a clear vascular risk assessment and an individualized plan
- Talk through the diagnosis with the people who matter most — at your pace
- Connect with peer community when you're ready
- Consider registry and research participation as part of long-term planning
For where you are right now.
At-risk relatives
Predictive testing decision support, genetic counselling resources, and the science of "to test or not to test."
Family planning
Information on inheritance, reproductive options, prenatal and preimplantation genetic testing, and how to find counsellors.
Partners & caregivers
Support for the people who walk this path with someone else — practical, emotional, and logistical.
Children & young adults
Age-appropriate explanations, school accommodations, and how to talk to young people about a family diagnosis.
Advanced disease
Care planning, advance directives, palliative-care principles, and supporting quality of life.
Practical strategies that help.
For the body
- Routine blood-pressure monitoring at home
- Consistent medication routines, with weekly pill organizers if helpful
- Regular aerobic activity — even short walks compound
- Mediterranean / DASH-style nutrition
- Sleep apnea screening and treatment
For the mind
- Cognitive engagement — reading, music, learning, social interaction
- Mental health support — depression and apathy are common and treatable
- Mindfulness and stress-management practices
- Therapy, peer groups, or one-on-one connections
- Honest conversations with people you trust
The hardest job — and the most invisible.
Partners, parents, adult children, and friends who provide care for someone with CADASIL deserve support too. Caregiver health is patient health.
Build your team
Identify two or three people you can call when things are hard. Distribute the load early — before crisis points.
Take care of you
Sleep. Movement. Friends. Therapy if you can access it. Caregiver burnout is real and predictable.
Plan ahead
Power of attorney, advance directives, financial arrangements. Easier when made early.
The hardest part wasn't the diagnosis itself — it was realizing how many of my mother's struggles, dismissed for years, suddenly had a name. The community helped me put the pieces back together.
— A CADASIL family member
Trusted external resources.
We're one part of a wider CADASIL community. The organizations and materials below have been valuable to patients and families we've worked with.
Cure CADASIL
A patient-led organization funding research and connecting families affected by CADASIL.
curecadasil.org →Think CADASIL
Awareness-focused peer resource with educational materials and community stories.
thinkcadasil.org →VASCERN — Dos and Don'ts for Patients
The European reference network's short, plain-language guide to living with CADASIL — what to do, what to avoid, and what to ask.
Read the guide (PDF) →American Brain Foundation
Broad brain-disease foundation with patient-facing information relevant to hereditary stroke and small-vessel disease.
americanbrainfoundation.org →The Memory Nook
Community and educational resource for people affected by cognitive change and vascular brain disease.
thememorynook.com.au →Cambridge University Hospitals — CADASIL patient guide
A patient information document from Cambridge University Hospitals covering diagnosis, symptoms, and day-to-day management.
Read the guide →External links open in a new tab. Inclusion is not a medical endorsement — always discuss with your care team.