Step 3: Who Else Needs to Know About This?

Step 3) Who else needs to know about this diagnosis?

Your team of medical specialists needs to have a clear understanding of their roles in your treatment. They need to know your treatment plan and where each of them falls into it.

Educating your family about HCU will allow them to better understand what you are going through as well as understand how they can best help you.

If the patient is your child and they are in childcare, daycare, or school, it is important that his or her caretakers and teachers have an understanding of the disease and their treatment. Remind them that they are not to give your child food or drinks without your permission.

Step 4: What treatments are available?  / Recent Diagnoses

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