Sheryl Marrazzo, parent to a Duchenne child, shares some tools she finds most useful in informing care providers in moments where time is of the essence.
Transcript
If you use your health care organization’s MyChart system, you have everything there, and it can be shared among your caretakers. We go to one place for my son’s neurology appointments, but someplace else for cardiology, so it’s important that they all know what’s going on with the patient and the family.
We also received an emergency bracelet from CureDuchenne. What if my son isn’t with me and there’s an emergency? Our disease is rare, and not everyone knows about it. In an emergency, the bracelet’s QR code can be scanned so the ER staff can quickly get up to speed.
I try to keep information easily accessible, whether on my laptop, phone, or iPad. Those are some of the ways I keep track of what’s going on day to day. It’s also important to understand your baseline, so when you go to a facility, you’re better informed and they can help you determine what to do next.
