“I grew up with a mom who had a rare genetic condition: Fragile X Syndrome. She wasn’t diagnosed until a year before she died. AMA.

Hey Reddit,

I’m someone who grew up with a mom who was always “different”—socially, emotionally, cognitively… but no one ever had a real explanation. For most of my life, her behavior was chalked up to mental illness, trauma, or just being “quirky” and hard to deal with. It wasn’t until a year before she passed away that we finally got a diagnosis: Fragile X Syndrome.

If you’re not familiar, Fragile X is a genetic condition that can cause intellectual disability, behavioral challenges, and a range of other symptoms. It’s underdiagnosed—especially in women—because the signs can be subtle, and the medical system often fails diagnosing women in general.

Looking back, so much of my childhood suddenly makes sense, but growing up without that context was… a lot and definitely impacted our relationship and the relationship we had with extended family.

I’m happy to answer questions about:

• What life was like day-to-day

• The process of getting her diagnosed so late

• How it impacted me emotionally, socially, and mentally

• What I’ve learned about inherited trauma and neurodivergence

• How I’ve processed it all as an adult (spoiler: still working on it)

This isn’t meant to be a sob story or an educational seminar—just a place to share if anyone’s curious or dealing with something similar. I’m open to talking about the hard parts, the funny parts, and everything in between.

Ask me anything.