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    Advocacy partners

Initiating honest conversation with Duchenne teams

More videos

Alan Chaulet

Colin Werth

Finding trusted Duchenne care

Honest conversations with MD

Speaking up in Duchenne care

Overlooked support

Collaborative care

Community insights

Trusting specialists

Regular huddles

PT frustration

See more videos

Riketa Smith is a certified medical assistant at Duke University Hospital and formerly served as the Pediatric Neuromuscular Program co-coordinator at Lenox Baker Children’s Hospital, where she worked with Duchenne families. She shares the ways a patient or their family can prepare for difficult conversations with their healthcare teams.

Transcript

Knowledge is power. Understanding your disease, your condition, the treatments available to you, the prognosis — all the bits of how this can affect your life — is huge.

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So when you have a provider that you don’t completely agree with, you can come to them, you can ask them questions, because you’re confident in your knowledge.

And if you’re not, you can also bring a support person. That support person can back you up on this. They can help you remember questions that maybe you forget to ask in the moment because you’re upset about something.

And so having that backup is, I think, essential and helpful when you’re feeling overwhelmed.

More videos

Brenda Wong, MD
Valuing overlooked members in Duchenne care teams
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