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Newly Diagnosed
This is everything I wish someone had handed my parents on day one. The five pages below are in order, so read them top to bottom. If you only read one tonight, read What Is PCD.
Step 1
What Is PCD?
What PCD is, what causes it, and why it is treatable. Start here.
Step 2How Does Carnitine Work?
The biology behind the carnitine shuttle and where PCD interrupts it.
Step 3Diagnosis
From the newborn screen to the tests that confirm it, and what it means for your family.
Step 4What Happens Now?
What the first weeks and months of treatment tend to look like.
Step 5Treatment & Lifestyle Overview
The core treatment, avoiding triggers, and what day-to-day life looks like.