Living with Cerebral arteriopathy, autosomal dominant, with subcortical infarcts and leukoencephalopathy, type 1
An inherited disease of small brain blood vessels that causes migraines and strokes and affects thinking over time.
Understanding Cerebral arteriopathy, autosomal dominant, with subcortical infarcts and leukoencephalopathy, type 1
It mainly affects small blood vessels in the brain's white matter. It is marked by migraine headaches and repeated strokes, which can progress to dementia. Other features can include seizures, vision problems, and mood problems like severe depression. It usually starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Migraine
- Small strokes (lacunar strokes)
- Changes in thinking (cognitive impairment)
- Apathy
- Mood swings (emotional lability)
- White matter changes on brain scans
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in NOTCH3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
United Leukodystrophy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: United Leukodystrophy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with United Leukodystrophy Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the NOTCH3 gene cause CADASIL. It is inherited in an autosomal dominant way, so one changed copy of the gene can cause it.
Also known as: autosomal dominant cerebral arteriopathy with subcortical infarcts and leukoencephalopathy type 1; cadasil; cadasil 1; cadasil syndrome; cadasil type 1; cadasil1
Patient organizations
- United Leukodystrophy FoundationCerebral arteriopathy, autosomal dominant, with subcortical infarcts and leukoencephalopathy, type 1 · United States
- cureCADASILCerebral arteriopathy, autosomal dominant, with subcortical infarcts and leukoencephalopathy, type 1 · United States
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