Colin Werth has Duchenne and lives in Farmville, Virginia. He’s 30 and was diagnosed in 1998. He opens up about why trust in your care team and speaking up for yourself makes all the difference.
Transcript
Yeah, I haven’t really had this issue myself. And I think that’s one thing the Parent Project tries to ensure with their certified centers — that they have good providers. Usually, all of the Duchenne experts are good about listening to their patients. I haven’t really had issues in that respect.
One important thing to mention — and I’m not sure if this directly relates to the question — is that, especially when you’re traveling, support matters. My mom is my caregiver, so I still go to appointments with her, and I’m comfortable with her being in the room and having those discussions.
But it’s important not to be afraid to ask, especially if your parents are there, whether you’d be more comfortable asking them to step out. I also think it’s really helpful when medical professionals encourage that kind of autonomy and open communication.
