• 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.
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  • 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!
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  • Donations

    Donations

    Our cheer package program runs on donations. To see how you can help PCD Smiles, visit our donations section today!
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  • 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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Written by PCD Smiles on . Posted in Ask Smile E..

Dear Smile E.

Someone said I should give up dairy because I have PCD. Is it true that giving up dairy will slow down my mucus?

Signed,

Dairy Lover

 

Dear Dairy Lover,

The dairy mucus myth traces back to ancient times and isn’t based in any real scientific facts. Unfortunately depending on which side of the dairy mucus debate look there are equally supportive claims, reasons, and supposed scientific data to back up each side’s claims. What we do know is that animal protein is extremely important in one’s nutritional requirements, and has been shown to be scientifically better for your body than plant protein. Shocking, right? Secondly the emulsification process of milk you consume it actually coats already present mucus in your throat and mouth making it appear as if milk is increasing your mucus. So basically the milk is making you aware of the mucus that you already have. This can induce coughing to clear the mucus you now know is there. Which coughing is the natural response to clearing stuck thick mucus. This is all perfectly normal. However most people cling to this process to prove the the milk increased their mucus production. Humans need dairy, including milk. We need the protein and calcium found in milk as well as other byproducts of dairy. Substituting dairy with plant based options my actually increase a person’s risk of nutritional and vitamin deficiencies, which may add unnecessary issues to a respiratory patient’s life and overall health picture. I encourage you to speak with your medical team today about your exact nutritional needs, especially before making any changes. Ask you team for a referral to a nutritional specialist today.

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: 1625

Written by PCD Smiles on . Posted in Ask Smile E..

Dear Smile E.

Is it true that you shouldn’t nebulize inhaled antibiotics in the same room with other people and pets?

Signed,

Dog Breeder with PCD

 

Dear Dog Breeder with PCD,

Yes that is absolutely true. You are supposed to nebulize inhaled antibiotics in a room by yourself, and preferably in a well ventilated room with a window possibly cracked open; even in the winter. The effects of inhaling antibiotics on your pets has not been studied and could potentially put your animals at risk of serious adverse advents that could be life threatening. The same goes for other humans; especially children, small babies, and the elderly. The effects of your inhaled antibiotics on other people could lead to adverse reactions including life threatening events for those people. This is first and foremost because we don’t know their health history and if they could potentially have a life threatening allergic reaction to your medications. Also they have their own ecosystem of respiratory bacteria in their lungs and exposure to inhaled antibiotics could upset their body’s happy balance to their ecosystem. Think second hand smoke and the whys and what fors of that subject and extrapolate them to other people inhaling in your second hand nebulized medications. For more information I encourage your to speak to your PCD Center’s licensed Respiratory Therapist during your next clinic visit.

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.

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!

***Please speak to your respiratory therapist or your PCD medical team before commencing any new treatment. DO NOT start using a device, or technique, on this website if you have not discussed this with your PCD team first.***

  • Hits: 1734

Written by PCD Smiles on . Posted in Ask Smile E..

Dear Smile E.

I read somewhere that coffee should be avoided with respiratory disease. And then on one of the Turtle Talk Café Facebook group’s nutritional post that caffeine was okay and actually a bronchodilator. I’m confused, which is it? Should I give up coffee or not?

Signed,

Coffee Drinking PCDer

 

Dear Coffee Drinking PCDer,

My best advice is to discuss this with your medical team to ensure that you are doing what is right for your exact medical needs and health history. It is true that the caffeine has a variety of pharmacological effects. It’s a weak natural bronchodilator which is said to improve airways function for up to four hours after consumption, and caffeine is also said to reduce respiratory fatigue. It’s is also chemically related to theophylline, which is a drug used to treat asthma. Some people even claim it can increase your lung function, some say immediately and others say the effect happens over time. This claim of increased lung function has little scientific evidence to back it up.

With all that being said, One case-control study in 2018 found a higher risk of chronic obstructive pulmonary disease (COPD) with coffee consumption. However a majority of studies ultimately concluded that coffee consumption can help ease breathlessness, increase lung function, effect pulmonary function test results, and lower the morbidity in respiratory patients. As always it’s ultimately up to you and your medical team to chose the lifestyle that best fits your exact health needs.

 

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: 2036

Written by PCD Smiles on . Posted in Ask Smile E..

Dear Smile E.

How do I get my husband’s name on the back of this year’s PCD awareness shirt put out by PCD Smiles? When can I buy one? And where does the money I spend on the shirt go?

Signed,

Raising Awareness for PCD

 

Dear Raising Awareness for PCD,

Here is the link to sign up your husband’s name for the back of this year’s 2023 PCD Awareness select merchandise. Sign-ups continue until 11:59pm central time August 31, 2023. Be sure to get your PCDer’s permission before submitting their name. Also the names of minor’s must be approved by a parent or legal guardian of said minor. Be sure to fill out separate forms for each person whose name you would like to add to the back of the shirt. And everyone must sign up again this year, even if you were signed up in a previous year!

Select 2023 Limited Edition merchandise with patient names will go on sale as soon as our designer gets the name image finalized and to our printer. That usually occurs within 48 hours of the close of name sign-ups. We predict that the 2023 Limited Edition PCD merchandise will be available sometime on September 4, 2023. All proceeds from the sales on PCDstyle.com & SmileEcove.com including the 2023 Limited Edition merchandise go to support the PCD Smiles Cheer Package program.

2023 PCD Awareness Shirt Sign-ups2023 PCD Awareness Shirt Sign-ups

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: 1655

Written by PCD Smiles on . Posted in Ask Smile E..

Dear Smile E.

My doctor says that since I have PCD he doesn’t recommend beta blockers for his lung patients. Do you know why beta blockers are bad for PCD?

Signed,

Fast Heart

 

Dear Fast Heart,

Beta blockers can cause bronco-constrictions, so it can make us feel more breathless and increase our risk of infections, inflammations, and such. However like corticosteroids in PCD, they (corticosteroids) aren’t recommended unless the patient has verified asthma too. If your heart specialist feels you need beta blockers and the risk of being without them is worse than the risk of being in them, then I would follow your cardiologist’s advice. Heart issues and PCD can go hand in hand, especially for those with situs ambiguous (aka heterotaxy), so a cardiologist who specializes in complex medical patients is advisable. They can give you much better information. I personally take metoprolol for heart and migraine headaches myself even though I have PCD with situs ambiguous.

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: 1873

More Articles …

Page 4 of 12

Random Fact Friday 2024.138

Random Fact Friday 2024.138

Written by PCD Smiles on May 17, 2024. Posted in Random Fact Friday

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

Random Fact Friday 2024.131

Written by PCD Smiles on April 25, 2024. Posted in Random Fact Friday

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

Random Fact Friday 2024.123

Written by PCD Smiles on April 23, 2024. Posted in Random Fact Friday

Did you know that this study found that patients...
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PCD from a Young Adult Perspective

PCD from a Young Adult Perspective

Written by PCD Smiles on September 09, 2021. Posted in Topic Thursday

When you are in your late twenties several questions keep popping up and very few have anything to...
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Probiotics in PCD care

Probiotics in PCD care

Written by PCD Smiles on November 25, 2021. Posted in Topic Thursday

Probiotics are basically microorganisms that live in your gut, the female vagina, and even on your...
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ACT Series, 14: Other Mechanical ACT Devices, Part 2

ACT Series, 14: Other Mechanical ACT Devices, Part 2

Written by PCD Smiles on April 19, 2024. Posted in Topic Thursday

As we near the end of our airway clearance technique (ACT) series there are a few other mechanical...
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