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Advocating for your child at Duchenne doctor visits

Sheryl Marrazzo shares advice for fellow caregivers on preparing for medical appointments, advocating with facts, and communicating effectively with clinicians.

Transcript

I think it is true that parents do know their children better than anyone else.

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And I think the real key is going into these situations not all angry and mama bear kind of a thing, but to be able to go in without the emotional part of it and advocate with real facts and to be able to turn them to sort of understand what your child, or whoever you’re caring for, what they truly need.

And I really, honestly, I think the best way is to go in there knowing what you want to talk about, knowing the facts. Having maybe things to refer to that make sense, but also to be willing to learn and to listen. You know, you hope that these people are experts in whatever it is that you’re there for.

So I think it’s important to go in with good information, less emotion, willing to learn, and willing to change your mind if perhaps that’s the best thing for your child or whoever you are caregiving for. But really, just go in nicely.

More videos

How to find a Duchenne specialist and certified care center
Dealing with Duchenne physical therapy frustration
Insisting on seeing all key Duchenne care members
Trusting Duchenne specialists know their stuff
See more videos

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