PKU.com Community Discussion Forum That’s PKU life! Looking For Pku Teen Friends Reply To: Looking For Pku Teen Friends

#7367
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BreaMarie91
Member

Hey, sorry to hear that you didn’t respond. That stinks. Yeah when I started Kuvan I was in the Sapropretin Expanded Access Program (SEAP). They took me out of the study a few months after Kuvan was approved in December ’07, but I’m still taking Kuvan of course.
As for meeting others besides relatives who have PKU, my mom used to run the PKU Organization of Wisconsin, so I’ve met plenty of others who have PKU. She had to give the organization up when I was about 10, but I still get to go to stuff. I actually just got back from a PKU camp today.

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