Getting the Best Care for Chronic Granulomatous Disease (CGD)

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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 from patients and caregivers about how they advocate for themselves and how you can, too.

Managing Your Care Team

Tips from medical professionals about how to get the best from your healthcare team.

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Dr. Artemio Jongco: Building a trusting and open relationship with your medical providers isn't always easy, but one good rule of thumb is to make sure that you're honest about what your expectations are, what your goals of care are, and what you expect from your providers.

Dr. Nicholas Hartog: The one thing I recommend is making sure you have a point person, you have somebody who is in control of the disease, in control of the team, talking with everyone, making sure all the specialists talk, everyone's on the same page, to get the best care out of the team that's helping to take care of your child.

Dr. Hana Neibur: CGD is a hard disease to understand, especially because it can do so many different things. So when you go to see your doctor, it's important to write down your questions before you go, and write down your answers. Get the information you need, and don't be afraid to ask those questions. You need to feel confident in the care your child is getting. And if you don't feel confident, you need to ask more questions.

[Dr. Artemio Jongco:] Patients' family members should feel empowered to demand that their doctors have open lines of communication with everyone on the team involved in delivering care. And then when things don't quite meet your expectations, or you feel that one part of the team isn't quite living up to their job, then make sure you let them know and give them a chance to fix it.

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