• 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


    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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  • Nothing is Sacred when you have PCD

    Nothing is Sacred when you have PCD

    There are a lots of things that I’ve had to get used to as I grew up doing life with PCD. One of those things was learning that unlike most others I had no privacy. I mean absolutely none...
  • 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...

 My parents were scammers, no seriously they were. I’m not lying about that. My parents coned so many people through the years and I was the subject of their number one con game. It’s truly a sad story.

This is the reason I always caution people to get their loved one’s permission before sharing their love one’s health related issues online and on social sites. Does your loved one want privacy? I did as a kid and was never given the opportunity to have any say what so ever. Nope, my parents just thrust my chronic illness out there for everyone to see. People even knew when my antibiotics gave me yeast infections. Seriously, as a teenager having my folks tell people my private stuff was embarrassing to say the least. However my parents’ game came first. It was always we have a sick child give us money. Or our daughter is on her death bed and we need final expenses for her, whether or not I was actually dying. I’m seriously not kidding. My folks scammed every local church for miles around for money because they had a sick child, me. My mom liked to exaggerate my issues, whatever got them the money. Money mind you that was never spent on us kids.

I’m truly not bitter at my folks, really I’m not they were who they were and I had to accept that long ago. And I’ve always said I wouldn’t say much till they were gone. I think now more people in the PCD community might understand my constant insistence to protect their loved one’s privacy, including the children who may not fully understand how sharing stuff now might come back to bite them as they get older. And some people are probably reading this thinking I’m paranoid in my thinking, I’m too over the top. But once things are out there on the socials, it’s out there forever. And speaking from experience, and even though it shouldn’t be legal, I have lost employment opportunities due to my parents divulging my health information. My Mister has lost job opportunities due to my public health information. It does still happen in this day and age. So I encourage you to think about your loved one’s future when deciding what to share on the socials. Ask your loved one how they feel.

Take it from someone who knows, being exploited because you are sick truly sucks!

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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