A patient’s perspective from our Founder:

Well you all know me and know I like to talk about the little know areas of PCD life, like this new spin on buffet type meals; food boards. For most people food boards are awesome, for me it’s a nightmare… Let me explain.

A few years during a family medical crisis involving my father I went a jumped on the first plane out of Minniapolis bound for my home state of Ohio. I wasn’t actively sick with and infection, but still in declining pulmonary status myself. I didn’t ask anyone, I just jumped on a plane bound for home as my father wasn’t expected to pull through. I did notice it took me extra time to get through the security and to the gate for my plane. But I did have two medical bags with me, on top of my carry on and personal item. My checked luggage was already taken care of. Due to my hearing I did request early boarding so I could get on the plane and not miss my announced times over the intercom. Those announcements I’m usually oblivious to, so the early boarding makes sure I’m not left behind.

There are many layers to caregiving when it involves a person who has primary ciliary dyskinesia. These layers peel back and change on the daily sometimes. It is definitely a strange onion to peel if I may make that analogy.

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 whatsoever. Nothing is sacred when you have primary ciliary dyskinesia. My life and my body was an open book to everyone. I guess it didn’t help that I had family that liked to share everything, and I mean everything. Imagine being in first grade and your teacher and classmates parents heard all about your antibiotic induced yeast infection. Or that your bowls were runny and you still wet your bed because the medicine you took wiped you out. Wiped you out so much that you often didn’t wake to go to the bathroom when your body said it needed to go.