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.
