Finding the right words to explain Moya Moya disease can feel overwhelming — especially when you’re still trying to understand it yourself. For many families, the diagnosis comes as a shock. It's rare, complex, and often completely unknown to the people in your life. But opening up about it matters. Whether you or a loved one has been diagnosed, learning how to explain Moya Moya in a clear and supportive way can make all the difference in building a community that truly understands.

If you’re just starting to learn about the condition yourself, check out our foundational post here: What is Moya Moya Disease? Symptoms, Causes, and Treatment Options — it breaks down the medical details so you can feel more confident explaining it to others.

In this post, we’ll walk through how to talk about Moya Moya with friends, family members, coworkers, and even children. We’ll offer practical tips, emotional insight, and gentle guidance to help you share your story — and get the support you need.

Why Explaining Moya Moya Is So Hard

Moya Moya is a rare disease — and rarity brings misunderstanding. People may confuse it with other conditions, underestimate its seriousness, or unintentionally say hurtful things simply because they don’t understand. That’s why your voice matters.

✅ Most people have never heard of Moya Moya before your diagnosis.
✅ The symptoms are often invisible or misread — like fatigue, slurred speech, or weakness.
✅ Without explanation, others may not grasp how serious or life-changing it can be.

Step One: Get Clear on the Basics

Before you can explain it simply, you need to understand it simply. You don’t have to become a medical expert — just try to grasp the core idea:

✅ Moya Moya is a rare brain disease where arteries at the base of the brain slowly narrow, reducing blood flow.
✅ The body tries to compensate by making tiny, fragile blood vessels — which look like a "puff of smoke" on scans.
✅ These fragile vessels aren’t strong enough to carry proper blood flow, and that puts the brain at risk of strokes or bleeding.

Simple Explanation You Can Use:

“It’s a rare disease that affects the blood vessels in the brain. The main arteries shrink, and the brain doesn’t get enough blood. That can lead to strokes, especially if it’s not treated.”

How to Talk to Different People in Your Life

🧓 Explaining to Parents, Grandparents, and Older Relatives

Older generations may struggle with unfamiliar medical language. Keep it relatable, and gently reinforce that it’s serious, but manageable.

✅ Avoid long medical words.
✅ Use comparisons they might understand (e.g., “It’s like the pipes to the brain are clogging, and the brain isn’t getting enough blood.”)
✅ Be ready to repeat things — it takes time to sink in.

👶 Talking to Children and Siblings

Kids need comfort and clarity. Depending on their age, keep the tone reassuring while being honest.

✅ “The doctors are helping fix the way the blood flows to the brain.”
✅ “Sometimes I get tired or need rest — that’s part of how Moya Moya makes me feel.”
✅ Let them ask questions. Even silly ones matter.

👫 Explaining to Friends and Close Support Circles

Friends often want to help but don’t know how. Being specific gives them something to hold onto — and a way to support you better.

✅ “You probably haven’t heard of it — I hadn’t either. It’s a rare brain disease, but I’m working with specialists.”
✅ “Here’s how you can help: be patient if I need to cancel plans, and just check in on me sometimes.”

💼 Coworkers and Acquaintances

You’re not obligated to share everything. If you need accommodations, keep it professional but direct.

✅ “I have a rare neurological condition that affects blood flow in my brain. It’s under medical care, but sometimes it causes fatigue or headaches.”
✅ “I may need flexibility during recovery or after treatments.”

What to Say When You’re Feeling Stuck

Some days you just won’t want to explain anything. That’s okay. Keep a few phrases in your back pocket when you need to set boundaries gently:

✅ “It’s hard to explain quickly, but I’m managing a serious condition with my doctors.”
✅ “I’d love to tell you more another time — today’s just not a good day.”
✅ “Thank you for asking. I’ll send you a link that explains it better than I can.”

Why Explaining Helps You Too

Every time you talk about Moya Moya, you raise awareness. You teach others how to show up for rare disease patients. And you remind yourself that you’re not invisible. This isn’t just about explaining — it’s about connecting. And connection is part of healing.

What to Do Next

✅ Create a one-paragraph explanation you can memorize or copy/paste.
✅ Consider printing a card with a short explanation for emergencies.
✅ Share a trusted article (like our Moya Moya overview) with friends or family via text or email.
✅ Join a support group — you don’t have to figure this out alone.

Final Takeaways

✅ You don’t need perfect words — just honest ones.
✅ The more you share, the more support you’ll build.
✅ You are not a burden. You are loved. And you deserve to be understood.

Living with Moya Moya is hard enough — don’t carry the weight of silence too. Speaking up creates space for hope, healing, and help.

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