What Even Is ARHGEF9?

ARHGEF9 is a rare, X-linked genetic disorder that affects brain development and function.

It’s caused by a change in a gene on the X chromosome - a gene that helps brain cells communicate. When that gene doesn’t work the way it should, it can lead to seizures, intellectual disability, autism traits, anxiety, and other neurological challenges.

As of 2025, only 57 people in the world have been diagnosed with this exact condition.

I’m one of them.

You can’t see it from the outside - but it shapes how I think, how I process, how I connect with others, and how I run through life.

Living with ARHGEF9

This rare condition affects less than 100 people in the world. Here’s what that looks like for me.

My Brain is Wired Differently

ARHGEF9 changes how my brain processes things.
I miss stuff that seems simple to others, like multi-step directions, social cues, or what people really mean. I can understand things, I just need a different approach, and more time. Once I get it, I get it.

School Wasn’t Made for Me

Learning was one of the hardest parts of growing up. Not because I didn’t want to learn, but because my brain doesn’t fit the system. I was always behind, even though I worked hard. Eventually I stopped trying to fit in and started focusing on the things I was good at.

Communication Takes Work

Talking doesn’t come naturally. Sometimes I struggle to find the words I want to say, or I say something that sounds “off.”
There’s a lot going on in my head, but it doesn’t always come out the way I mean it. I’m still learning how to explain myself.

Anxiety is Part of My Whole Life

Most people don’t see it, but I deal with a lot of pressure and overthinking.
I overanalyze things, get stuck in worry, or freeze up.
Some days are heavy. But I’ve learned a lot of different ways to cope,
running is a big one.

There’s Strength in It Too

This condition makes things hard, but it’s also shaped who I am.
I care deeply. I don’t give up easily. I see things other people miss.
I notice patterns. I’m more than my diagnosis, and that’s what I
want people to know.

Running Through It

There’s no manual for this condition. So I’m writing my own…one mile, one post, one brutally honest moment at a time.

FEATURED POSTS
Running My Own Race
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Running My Own Race
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Graduation wasn’t supposed to feel like this. I didn’t walk away with a diploma, but I refused to let that define me. Instead, I set my own finish lines. Those miles taught me grit, resilience, and that belonging doesn’t come from a certificate, it comes from finding your place and refusing to quit.

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Still Me
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Still Me
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I’ve always known something was different.

I just didn’t know what to call it.

This is the story of how I finally got my diagnosis and why it didn’t change who I am.

I’m still me.

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They Said I Wouldn’t
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They Said I Wouldn’t
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They said I wouldn’t, but I did.
Growing up without a diagnosis, I was told all the things I’d never do. Talk normally. Read. Graduate. Matter. But I’ve been proving people wrong since I was a kid. I keep showing up, doing things my way, and refusing to quit. This is my story of moving past the limits they put on me.

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Figuring It Out: Resources That Help

I’m building some resources for people that live with a disability. Just a few for now, but I’ll keep adding more as I go.

You don’t always see what someone’s dealing with. But that doesn’t mean it’s not real. These are things I’ve learned along the way, even when it’s hard. If they help you too? That’s the whole point.

FREE GUIDE:
Supporting Someone With A Disability

AWARENESS PACKAGE:
ARHGEF9
What You Should Know

REAL TALK GUIDE:
Tips for Speaking Up When You Don’t Know What to Say