• 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!

This week reality has plum smacked me in the face my friends. I’m fast approaching the age of fifty and while my counterparts are mostly already there, or close to there as I am, they seem to be oblivious to the fact that I’m struggling. Struggling to keep up. It’s often very hard for those without cardio-pulmonary conditions to fathom being breathless, getting sick from pushing themselves, and so much more. If you have both cardiac and pulmonary issues then you get a double whammy of suck.

I think people forget that you have a chronic condition when you’ve had it so long, either that or they haven’t seen your declining health up close and personal as of late. This week I found myself in what felt like a marathon chase through the grocery store with my companion/ helper while I’m vacationing in my hometown. Don’t get me wrong, they weren’t racing, they were walking. Back in my day I too could keep up the power walk through the grocery store and be just fine. Yesterday I felt like I was a toddler struggling to keep up with giant people who could walk better, faster, and further than I could. You know those little bitty kids you see chasing their people through the store aisles and running to keep up because they had little legs. I’m actually a few inches taller than my companion is. They were running circles around me. I felt like I needed to lay down in the middle of each aisle-way every fifty feet. I kid you not! They weren’t exactly noticing my plight, because they just kept going leaving me in the dust. All the while chatting away with me and expecting answers and conversations, completely oblivious to my breathlessness and that fact at one point I thought I was gonna die I was so out of breath. My coughing didn’t register with them either. In fact I felt ignored. Now is my companion that heartless? No! Today, in hindsight, I think they were just being polite and not making a fuss and where graciously ignoring the situation. But maybe, just maybe they didn’t realize how truly in trouble I was. I need to learn to advocate better for myself in the presence of people I want to be liked by, be friends with, or that I don’t want to be a burden to. Believe it or not, it’s hard to advocate for your needs with family and friends. If you have a struggling PCDer in your life please slow down!

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: 2324
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...
Which Situs are You?

Which Situs are You?

Cilia are thought to play an important role in organ placement during the embryonic stage of...