Colin Werth has Duchenne and lives in Farmville, Virginia. He’s 30 and was diagnosed in 1998. He shares why finding your voice during appointments can make all the difference.
Transcript
Yeah, I haven’t really had this issue myself. I think that’s one thing the Parent Project tries to ensure with their certified centers — that they’re staffed with good providers. Usually, all of the Duchenne experts are good at listening to their patients, so I haven’t had issues in that respect.
One important thing to mention, especially if you’re traveling, is how caregiving works during appointments. 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 also important not to be afraid to speak up — whether that means asking your parent to step out of the room if that would make you more comfortable, or encouraging medical professionals to create space for those one-on-one conversations.
Ultimately, patients should feel empowered to advocate for themselves, and providers should help make that easier.
