• 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!

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.

When bacteria and or debris is stuck in the airways for extended periods of time, that bacteria and or debris likely will spin up into an infection causing inflammation and respiratory damage in its wake. People with primary ciliary dyskinesia are prone to airway inflammation and repeated infections. One of the best ways to clear the airways is with cough clearance. Luckily PCD patients retain their natural cough clearance. In fact constant daily productive coughing is a chief complaint amongst the patients and their families. Coughing is healthy in PCD as long as the cough is productive, meaning the patient is get mucus and stuff up. Nonproductive coughing Should be addressed by your medical team.

Holistic medicine has made a big come back over the last decade. Herbs, essential oils, and other remedies like exercise and manipulation are now more mainstream. These can seemingly go hand in hand with western medicine. There are a few things to keep in mind. Like diffusing essentials oils into the air should never been done in the presence of a person with PCD, due to the increased risks of the person with PCD developing lipoid pneumonia due to their poor airway clearance. Essential oil use for a PCD patient should be limited to topical uses for safety. Ingesting essential oils is also not recommended for people who have PCD, because of the risk of refluxing the ingested oils into the lungs.

Due to a person with PCD forceful coughing techniques during airway clearance treatments they are prone to refluxing due to the weakening of the lower esophageal sphincter. Manual chest physiotherapy is a mainstay of treatment in airway clearance techniques. However, doing inverted airway clearance and or inverted autogenic drainage has been shown in studies to accelerate Bronchiectasis progression due to gastric refluxing seen in people with mucociliary clearance disorders like PCD and CF. Back in the seventies and eighties inverted chest physiotherapy was a mainstay airway clearance technique that is now heavily discouraged due to the risk of reflux speeding up the progression of Bronchiectasis.

Burning incense and other herbs should be done in a well ventilated room to prevent smoke exposure to a person with PCD. The herbs and other incenses may be best burned out of th presence of a person with PCD, like before their arrival or at a time when they are not home for like say cleansing purposes. Also care should be exercised when ingesting herbs due to medication interactions. Ask your pharmacist about any concerns between whatever herbs you might be thinking of taking and your current list of medications. Your pharmacist will best be able to access the drug and herb interactions potential based on their knowledge of the pharmaceutical information over that of your doctor.

The living a holistic lifestyle alongside of primary ciliary dyskinesia is very doable and manageable just be sure to include your medical team in your lifestyle decision making. You will be surprised at how supportive and accommodating that your team can be in your lifestyle choices. Your team will best be able to help you sort out your individual needs based on your choices and their knowledge and experience with other people living the holistic life style.

Be sure to join us next week for another Topic Thursday.

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!

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