• 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!
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  • Nasal Washes, Yay or Nay?

    Nasal Washes, Yay or Nay?

    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...
  • Disordered Sleeping and Sleep Disturbances in PCD

    Disordered Sleeping and Sleep Disturbances in PCD

    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. Sleep related...
  • Can I live a Holistic Lifestyle with PCD?

    Can I live a Holistic Lifestyle with PCD?

    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...
  • PCD Awareness Month a Necessary Evil?

    PCD Awareness Month a Necessary Evil?

    We are a little less than two weeks away from another PCD Awareness Month. I’m just not feeling it this year. It seems to get a little more difficult each year, and I am not sure why it gets more...

 To date there have been limited published studies of antibiotic usage to control airway inflammation in PCD. With PCD being relatively new to the research arena there are unfortunately very limited data collection and or research into specific PCD treatment and management. Much of what doctors do today to treat their PCD patients is borrowed from Cystic Fibrosis (CF) research and established CF treatments and guidelines. This is in part because CF is basically mucoclearance issues just as PCD is. However though the disease path in CF seems similar to PCD, both diseases are due to different physiological reasons which are independent of each other.

Another treatment method often see in CF that is currently under use in PCD care is the usage of low dose antibiotics, sometimes referred to as prophylactic antibiotics, which are aimed to target airway inflammation. Airway inflammation is a key factor in disease progression in Cystic Fibrosis patients, more so than chest infections. The theory behind low dose antibiotics for inflammation is to control inflammation and or erase inflammation which should slow down disease progression. These low dose antibiotics called “macrolides” are often given three times a week; usually on Monday, Wednesday, and Friday schedule. Macrolides are a broad spectrum antibiotic class which includes Clarithromycin (Biaxin), Azithromycin (Zithromax), Erythromycin, Spriamcin, and Telithromycin. Macrolide antibiotics are often prescribed to treat everyday infections, but have lately come to be known for their anti inflammatory properties. Those anti inflammatory properties have made them an excellent choice for use in controlling airway inflammation and thereby reducing or slowing disease progression in CF. Whether this translates over to disease progression in PCD remains to be seen. However, when put in practice by physicians for their PCD patients the antidotal evidence suggests that reducing inflammation in PCD seems to slow the disease progression in PCD.

One common misconception in using low dose prophylactic macrolides is that the patient should not get/ acquire respiratory infections because the patient is on prophylactic antibiotics. It’s important to note that low dose prophylactic antibiotics do not provide therapeutic treatment of any systematic infections in the body. This is because the dosage of the macrolides is not high enough to actively fight an infection in the body. The main purpose of the use of longterm macrolides is to target inflammation, not to target and prevent any other infections.

Be sure to visit 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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PCD Smiles’s 1st  Biennial Fundraiser Painting 4 Smiles

PCD Smiles’s 1st  Biennial Fundraiser Painting 4 Smiles

Can you help us reach our goal? PCD Smiles’s 1st Biennial fundraiser Painting 4 Smiles runs the...
Random Fact Friday 1

Random Fact Friday 1

“Regular clinical visits to monitor disease status are key. Aggressive treatment is recommended to...
Urgent Stuffies Needed for our Cheer Packages!

Urgent Stuffies Needed for our Cheer Packages!

We are in great need for all things stuffy for our littlest cheer package recipients. Our younger...
Things Not to Say to a Person with PCD or their Caregivers

Things Not to Say to a Person with PCD or their Caregivers

For Rare Disease Day 2018 we asked the PCD (Primary Ciliary Dyskinesia) community, “What are your...