• Our Mission

    Our Mission

    Our mission at PCD Smiles is to bring smiles to hospitalized primary ciliary dyskinesia, no mater their age; through the gift of a cheer package. Currently serving only The United States and Canada.
  • Request Cheer Package

    Request Cheer Package

    Know of a hospitalized primary ciliary dyskinesia patient? Please visit our “Request a Cheer Package” link and fill out our secured form to submit them for a cheer package today!
  • Donations

    Donations

    Our cheer package program runs on donations. To see how you can help PCD Smiles, visit our donations section today!
  • The PCD Artist Project is a collaborative effort by artist to raise awareness for PCD & support the PCD Smiles cheer package program. Visit our exhibits today!

Dear Smile E.

Is it safe to clean my airways clearance devices with water straight from the facet?

Signed,

Water Worries

 

Dear Water Worries,

When cleaning your airway devices including nebulizer cups, clean water is recommended. Just what exactly clean water is is often misinterpreted by the masses. Nontuberculosis mycobacteria (NTM) experts have starting sounding the alarm that most NTM infections are being driven by use of non-sterile water and or distilled water to clean and rinse airway clearance devices. Water straight from the taps in not clean/sterile by any means. The process used in water sanitization in residential zones does little to kill off nontuberculosis mycobacteria in residential water sources. NTMs do not make the average population sick, but in immunocompromised and respiratory-compromised people NTM can cause life threatening illnesses. The most common NTM to cause illness in PCD patients is nontuberculosis mycobacterium avium complex (also known as MAC). However thirteen percent of PCD patients will endure a mycobacterium abscessus infection which one of the hardest NTMs to treat let alone eradicate. NTM experts are advising patients to stop using distilled water even in their sinus rinses as the process to distill water also is not effective to kill off NTMs in the water. The advice is to boil your tap water for five minutes before using it to clean your equipment, remember to mask while boiling to protect yourself from organisms that escape into the air while boiling. Your provider can also prescribe actual sterile water for your cleaning needs. In a pinch and while traveling NTM specialist agree bottled spring water can be used instead, however weekly or nightly sterilization processes should be completed with all equipment depending on manufacturer recommendations.

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.

Join our Facebook group Turtle Talk Café today, click here.

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

- Visit Smile E. Turtle's Amazon Wishlist

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies.

- Or sponsor a PCD Smiles cheer package today!

- To shop for your “Official” turtle care ribbon gear today, visit PCD Style or Smile E. Cove

Thank you for your consideration!

  • Hits: 2147
Random Fact Friday 2024.138

Random Fact Friday 2024.138

Primary ciliary dyskinesia (PCD) is a congenital motile ciliopathy, associated with chronic...
Random Fact Friday 2024.131

Random Fact Friday 2024.131

Did you know that olfactory dysfunction is common in chronic rhinosinusitis (CRS); indeed, it is...
Random Fact Friday 2024.123

Random Fact Friday 2024.123

Did you know that this study found that patients...