• 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!

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 difficult. Maybe it’s I’m getting older and older and my PCD progression marches on with time. Maybe it’s I feel no one is listening and no one actually cares. Honestly it’s probably just vid fatigue. Everyone is tired of hearing about medical issues. You got what a you got so get on with life, is pretty much how I’d sum up everyone’s attitudes. It’s no secret that 2022 has been a hard year for me. All things considered, and all things laid bare I’m ready for a change. Though I’m not sure what kind of change I’m looking for either.

In a few weeks time, everyone is going to role out all the positive life stories despite PCD. I’m kind of envious, because I want my rose colored life too. That’s just not the hand I was dealt unfortunately. It wasn’t some magical life where my parents loved me and supported me despite PCD. PCD made my life hard, harder than I wished it had and that is just the truth of the matter. I look around at all these rosy storylines of people with PCD with a bit of envy and a bit of skepticism. Are they really telling the whole truth or have they just not gotten to the harder aspects of doing life with PCD yet. I wonder about the embellishments of storylines of others in public all the while behind the curtain they are a whole different person with a whole different story. Why must we suffer our trials in private? Why is it such a taboo thing to share your PCD struggles? These are my thoughts as I read all these wonderful storylines of PCD life. PCD life is tough and I’m not sure why we are supposed to hide that fact.

PCD Awareness month is a necessary evil because we need awareness to help fund a cure. However doing life with PCD isn’t some grand adventure where they live happily ever after. I think maybe that fact has been glossed over too much…

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!

  • Hits: 2531
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...
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...