There are a lots of things that I’ve had to get used to as I grew up doing life with PCD. One of those things was learning that unlike most others I had no privacy. I mean absolutely none whatsoever. Nothing is sacred when you have primary ciliary dyskinesia. My life and my body was an open book to everyone. I guess it didn’t help that I had family that liked to share everything, and I mean everything. Imagine being in first grade and your teacher and classmates parents heard all about your antibiotic induced yeast infection. Or that your bowls were runny and you still wet your bed because the medicine you took wiped you out. Wiped you out so much that you often didn’t wake to go to the bathroom when your body said it needed to go.

Are you Team Yay or Team Nay when it comes to nasal washes for you or your loved one with primary ciliary dyskinesia (PCD)? Nasal washes are an integral component to PCD care, or rather they could be. The thing is, is deciding just when in life they should be introduced to a person with PCD. But don’t get me wrong nasal washes may just not be your thing for more than personal comfort, there may be a medical reason keeping them from helping someone who has PCD. So how do we know which team to pick, which side is really right for your exact overall needs?

Disordered sleeping and sleep disturbances are more common in PCD than once thought. It’s not surprising given that you need to be able to breathe properly in order to sleep properly.

There are no studies into holistic lifestyle alongside a primary ciliary dyskinesia (PCD) diagnosis. There are however a few antidotal reports from the PCD patient population where patients have self reported following a holistic lifestyle and seeing great benefits. What these great benefits are remains to be seen. Primary ciliary dyskinesia is a genetic level defect of the motile cilia throughout the body. One of the biggest effects to the body when you have malfunctioning cilia is delayed airway clearance as the body’s mucociliary escalator is compromised. Having a messed up mucociliary escalator means that airway clearance of debris and bacteria is delayed up to seven days compared to a healthy counterparts airway clearance time of up to twenty four hours.