Hi guys, my names Christin. I'm a 16 year old with PKD that was diagnosed 5 days ago. I have had the disorder since I was 13. I experience involuntary movements/spasms in both arms, and legs, and some sort of paralysis (?) in my brain. These occur when I make sudden movements (Say, immediately walking after being seated for a while, or walking straight after the lights turned green) or if I'm scared, startled or taken off guard. In most cases I get a 'feeling' that warns me about a episode, sometimes tensing my body or moving my limbs can stop it.

Not much is known about PKD, It's a very rare disorder, I'm one of the 50% that did not inherit the disorder from my family. I believe I have a dysfunctional gene of some sort, but doctors aren't sure. A drug that is usually for patients with Epilepsy has been prescribed, there is no cure specially designed for PKD.
I want to see if I can meet people like me who have this disorder, or people who have movement deficiencies or rare disorder.

So yeah, that's my story, what's yours?