Understanding CADASIL
An interactive journey through what CADASIL is, what it looks like, and how to advocate for yourself.
You don't have to read this in one sitting. Stop whenever you need.
What Is CADASIL?
CADASIL stands for Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy.
In plain language: It's a genetic condition that affects the small blood vessels in your brain. Over time, these vessels get damaged, which can lead to migraines, strokes, mood changes, and cognitive issues.
It's rare. It's often misdiagnosed. And if you're here because you suspect you or someone you love has it, I'm sorry. This is hard.
How CADASIL Works
1. Genetic Mutation
A mutation in the NOTCH3 gene causes protein buildup in blood vessel walls.
2. Blood Vessel Damage
Small arteries in the brain thicken and narrow, reducing blood flow.
3. Symptoms Emerge
Migraines, strokes, mood changes, and cognitive decline can all result.
What Early Symptoms Look Like
Most people with CADASIL start noticing symptoms in their 30s or 40s, but it can show up earlier or later.
Severe Migraines (with Aura)
Often the first sign. Visual disturbances, intense headaches that don't respond well to typical treatments.
Mood Changes
Depression, apathy, irritability. Often misdiagnosed as a mental health condition.
Cognitive Fog
Memory issues, trouble concentrating, slowed thinking ("brain fog").
Small Strokes (Lacunar Infarcts)
Often "silent"—no major symptoms, but they show up on MRIs and add up over time.
What I Wish Someone Told Me Earlier
"CADASIL doesn't define you, but ignoring it won't make it go away. Get genetic testing if you suspect it. Advocate loudly. Bring documentation. Don't wait for doctors to figure it out."
"It's genetic, which means your family might be affected too. That's heavy. Take care of yourself first, then think about next steps."
"You're not imagining it. You're not overreacting. If something feels wrong, trust yourself."
— Dalton Goodyear
Resources & Next Steps
📚 Read the Full CADASIL Guide
Plain-language resource on symptoms, diagnosis, and treatment.
🧭 Try the CADASIL Pathway
Step-by-step guidance for understanding and advocating.
🩺 Bring to Your Doctor (PDF)
Downloadable toolkit with symptoms checklist and genetic testing request.
💛 For Family Members
Supporting someone with CADASIL? Start here.
If you made it this far, you're doing hard work. Stop here if you need. This will still be here tomorrow.
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