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Jul 18, 2018 Latest post:
Oct 12, 2018
It has not been an easy ride. Andy and I are here to share our story of Drew to help raise awareness for a rare lung disorder called Primary Ciliary Dyskinesia. PCD is a progressive disorder, meaning it will get worse over time, for which no cure currently exists. We feel it is important to not be silent, and to share Drew's Journey in hopes that one day a cure will be found! (Thank you for watching our Video below!)
What is PCD? PCD is a progressive disorder, meaning it will get worse over time, for which no cure currently exists. The PCD Foundation envisions a world free from illness and early death due to primary ciliary dyskinesia (PCD), and in order to carry out their vision, they strive to do the following by 1) improving diagnosis, quality of life and prognosis through research, 2) educating & support patient, scientific, and medical communities and 3) raising awareness of PCD.
Disease Management Since there currently is no cure for PCD, management is focused on symptom relief and slowing the progression of lung damage. Daily interventions include airway clearance and aggressive treatment of respiratory inflammation and infection in the upper and lower respiratory tract. More strenuous intervention is required for disease exacerbations (flare ups). The use of IV or inhaled antibiotics and supplemental oxygen may be required for acute symptoms. Repeated hospitalizations are common in PCD.
Long-Term Outlook People with PCD are sick from birth and experience a greatly diminished quality of life. Disease expression is variable with some succumbing to lung damage early in life. Others may live into the fifth, sixth, or even seventh decade, but the disorder is progressive and quality of life issues result in a lifespan that is far from ‘normal.’