Did you know that a person who has PCD (Primary Ciliary Dyskinesia) can be born, live their whole life, die, and never be diagnosed with with PCD? This is what has lead to an inconsistent data collection for researchers. Babies who often die just after birth are never given much of a diagnosis beyond pneumonia or respiratory failure. The true cause of a baby’s death isn’t explored unless the family pushes for it via autopsy. People with PCD are often misdiagnosed or just diagnosed with asthma, COPD (Chronic Obstructive Pulmonary Disease), and or BE (Bronchiectasis) and the underlying cause of their COPD or BE is never explored. Even patients who have had lung transplants may or may not have had PCD, and the PCD diagnosis was missed. The very wide range of symptoms and severity levels of PCD, which sometimes can be correlated to the PCD causing gene mutation that a person has, can contribute to a person living their whole life without knowing that they have PCD. This is why it is so hard for researchers to have an accurate life expectancy outlook for the PCD patient.
The more you know…
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