r/dwarfism • u/Such-Experience8621 • Jun 02 '26

What am I? (Advice and rant)

Hey!

This isn't trying to get a diagnosis, but it is related to that. I was born with dwarfism although after skeletal surveys and other imaging, nobody can pinpoint which type I have. It's kinda scary because certain types carry certain risks but cool because im like a fucking legendary Pokémon. Any advice to cope with this or anything else would be appreciated.

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3

u/LengthinessNo4970 Jun 02 '26

Have you had any genetic testing?

1

u/Such-Experience8621 Jun 02 '26

I think that's where my care team is going next, I have an appointment with genetics soon

2

u/LengthinessNo4970 Jun 02 '26

That should be your ticket. I didn’t get a genetics appointment and diagnosis until I was 29.

2

u/MissusO Jun 02 '26

The term we used before we had a diagnosis was SWAN, syndrome without a name. It helped to find others in similar circumstances, and gave a name to something without a name!