Dear Smile E.,

How are primary ciliary dyskinesia patients fairing with Covid-19? What’s the actual scoop on what’s really going on. Is the outlook really as good as people are saying.

Signed,

Covid Concerns

Dear Covid Concerns,

Surprisingly the PCDers who have contracted Covid to date have faired pretty well. Researchers are optimistic that we with PCD may fair well in the face of contracting Covid. There have been few reported hospitalizations due to Covid in the Covid PCD international study. The results look promising. Oh don’t get me wrong, there have been a few hospitalizations due to Covid for some PCD patients. And I know of personally two who were in the ICU, compared to the study reported no ICU stays. The thing to keep in mind about the patient self reporting study of Covid among PCD patients relies solely on patients actually self reporting and filling out the study questions accurately, not to mention the voluntary participation in the study. The PCD experts that I’ve talked to believe that we are fairing better because we are more respiratory hygiene aware than the general population. I recently saw another person say that their doctors believe our mucus in PCD prevents the virus from attaching to our respiratory system. I’m skeptical at this explanation, because then why do we PCD patients get other viruses and every person on the planet has mucus in their respiratory system, it’s what protects out airways and hydrates them. I hope to see our community continuing to beat Covid now and in the future. These findings though shouldn’t encourage any of us to let our guard down in respect to Covid. Stay safe my friend!

Yours Truly,

Smile E. Turtle

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Dear Smile E.

I’m really learning a lot lately and had a question about airway clearance devices. I have two children with primary ciliary dyskinesia and two children without. I’ve been researching games to make airway clearance more fun for my toddlers and ran across your website. My question deals with having multiple children participating in the games at once, can the all use the same straw for this football game I found? They blow a cotton ball back and forth across the pitch to the goals. Should they all have their own straws? The game directions are not clear. Can my PCD kids share straws.

Signed,

PCD Football Mom

Dear PCD Football Mom,

Thank you for taking the time to submit your question in writing. As per our discussion through Facebook direct messaging, everyone playing should have their own straws to prevent cross contamination of bacteria. Cross contamination of bacteria in PCD is not well understood at this time. However given the seriousness of cross contamination in other mucociliary clearance disorders like cystic fibrosis for instance exercising caution is prudent. If the pandemic has shown us anything, it is that cross contamination is a huge deal when it comes to respiratory illnesses and infections. It is definitely important to never share airway clearance devices, up and to including airway clearance vests and the actual vest machine itself.

I’d also like to publicly thank you for helping PCD Smiles’s with all the cool airway clearance activities for our Fun-Physio with PCD Smiles segment.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

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Dear Smile E.

My child wants a dog. Are dogs okay for someone with PCD?

Signed,

Puppy or No

Dear Puppy or No,

Primary ciliary dyskinesia does not necessarily exclude pets from a patient’s life. In fact pets have been shown to improve a chronic illness patient’s mental and physical health. I would caution you to make sure your PCD loved one isn’t allergic to whichever pet you decide on, because that can be a deciding factor on whether your puppy is appropriate or not. There are hypoallergenic canine breeds out there, however from experience a hypoallergenic breed was actually a big allergy trigger for me personally. So I caution you bot to rely on the word of “hypoallergenic breed” claims for the canine that you are looking at, because it truly is an individual thing. I’d also like to caution you on grooming, as certain smells from cleaning and shampooing agents can be triggering to respiratory patients. Good luck on whatever you decide.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

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Thank you for your consideration!

Dear Smile E.

I injured my back a few weeks ago and my vest machine is really killing me during treatments. Honestly all airway clearance hurts at this point. What should I do? Is there anything I can do besides just skipping my treatments.

Signed,

Airway Clearance Hurts

Dear Airway Clearance Hurts,

This is definitely a topic to discuss with your PCD team. There are most definitely ways to modify your airway clearance regiment around an injury, surgery, and pain. You can adjust your vest settings down to the lower level suggested by your PCD Team Respiratory Therapist. The great things about the vest is that they can be adjusted to allow you to still get your treatment in with minimal pain. You will however have to ask your team what the appropriate lower settings are in your case. I suggest starting by lowering the hertz be fore lowering the pressure of the vest. The higher numbers seem to make even minimal pain from minor surgery or injuries hurt. Most surgical teams will say to stay at your settings because the vest doesn’t interfere with there surgical area, but I thing that those surgical teams do not consider then referred pain associated with being shaken in the vest or during any airway clearance techniques. I strongly recommend that you call your airway clearance prescriber as soon as possible to discuss any needed modifications to you airway clearance treatment plan. I do hope that you are feeling better soon!

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

And tune in next Sunday to read the latest Ask Smile E.

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We have several ways that you can donate to PCD Smiles;

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Thank you for your consideration!