CADASIL Toolkit · Family & Conversation Scripts
Words for when you don't have them.
You don't have to say any of this word-for-word. These are just starting points.
When you suspect CADASIL but don't have a diagnosis, it's okay to share uncertainty.
Option 1:
"Hey, I wanted to share something I've been looking into. It's called CADASIL. I don't have all the answers yet, but I didn't want to carry this by myself. Can we talk about it together when you have the space?"
Option 2:
"I've been noticing some symptoms that might be related to a genetic condition. I'm still learning about it, but I wanted you to know what's going on. Can we figure this out together?"
How to tell family when you've been diagnosed with CADASIL.
Option 1:
"I got test results back. It's confirmed—I have CADASIL. It's a genetic condition that affects blood vessels in the brain. I'm still processing this, but I wanted to tell you because it might affect the family too. We don't have to solve everything today."
Option 2:
"I have some news. The diagnosis is CADASIL. It explains a lot of what I've been feeling. It's genetic, which means family members might want to get tested too. I know that's a lot. Let's take this one step at a time."
Age-appropriate language for younger family members.
For younger kids:
"You know how sometimes I get really bad headaches or feel tired? The doctors found out it's because of something in my body called CADASIL. It's not contagious, and it doesn't mean I'm going away. It just means I might need extra rest sometimes, and we'll work with doctors to help me feel better."
For teens:
"I want to be honest with you about what's going on with my health. I have a condition called CADASIL. It's genetic, which means it runs in families. I'm telling you this because you deserve to know, and because when you're older, you might want to talk to a doctor about it too. But right now, we're focusing on managing it together."
How to share your worries without shutting your partner out.
Option 1:
"I've been scared to talk about this, but I need you to know what's on my mind. I'm worried about how CADASIL might progress, and what that means for us. I don't have all the answers, but I don't want to carry this fear alone. Can we talk about it?"
Option 2:
"Some days I feel okay, and other days I'm terrified about the future. I don't want to burden you, but I also don't want to pretend everything's fine when it's not. Can we figure out how to navigate this together?"
It's okay to need help. Here's how to ask for it.
Option 1:
"I'm having a hard day, and I could use some support. Would you be able to [specific thing]? It would really help me right now."
Option 2:
"I don't want to overwhelm you, but I'm struggling today. If you have capacity, could we [spend time together / talk / etc.]? If not, I understand—I just wanted to ask."
When conversations become too much, you're allowed to pause.
Option 1:
"I appreciate you caring, but I'm not ready to talk about this right now. Can we revisit it later?"
Option 2:
"I know you're trying to help, but I need some space to process this on my own first. I'll reach out when I'm ready."
Option 3:
"This conversation is getting overwhelming for me. Can we take a break and come back to it another time?"
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