Help for getting the best care with chronic granulomatous disease (CGD)Read the full video transcript
Don’t ever feel intimidated by the doctors or the nurses. They don’t always know what’s going on with your child. You know your child best, better than the doctors. So stand up, and if you feel like something is wrong with your child, just be consistent and don’t give up. Get the answers that you need.
Being your child’s voice is the main thing you’re there for. I’m the one that’s with him every day knowing the symptoms and knowing something is wrong. So when something is wrong, being that advocate to say, no, this is what’s happening. Here is the documentation of what’s been going on.
You don’t want to hold back anything. Even if you think it’s silly. You have to advocate for yourself because they’re not going to ask the right questions. They don’t know your body the way you do. And something that feels very insignificant could be something very major.
Having a good healthcare team is essential for anybody trying to manage CGD. You need somebody who listens to you, who will work with you, who understands the intricacies of this disease.
We would bring our information on CGD, our book on it. I made sure every nurse had a copy of the information out of that book so they knew what they were treating.
So the minute you enter as an inpatient, you want to start speaking up and saying I really think this is bothering me or I really am concerned about this, and not with just the doctors but with the nurses and the nurse practitioners around you because the more people you can incorporate into that care team as an inpatient, the better off it’s going be and the earlier it’s going get diagnosed for you and treatment can begin.
When it comes to CGD care, you play a very important role. By speaking up, you make sure you or your loved one is getting the best care possible. Get tips and advice from patients and caregivers about how they advocate for themselves and how you can too.
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