Living with PCD

Hello all!

Sorry, no words of inspiration today. As some of you that follow me may know, I’m a person with a chronic disorder called Primary Ciliary Dyskinesia or PCD. I have an even rarer form of the disorder that all of my internal organs are reversed. October is PCD awareness month. So I decided for today’s post I’ll share some personal struggles I have with PCD.

This disorder affects my ears, lungs, maybe my ability to have kids, and my sinuses. In my case, the disorder At times I fell like the king of the world and other days I feel like I have no energy at all. Some days I can hear a pin drop and on others, I have the hearing of an old man. I have missed dates, family events, and work because I had to fight off lung and sinus infections. I’m on my 50th or 60th set of ear tubes. I’ve truly lost count. Because of my cough and runny nose, people think I’m the walking plague. I now have the daily routine of wearing a vest and taking breathing treatments. This process takes two hours out of my daily routines but it is worth it.

It can get very gloomy at times. Especially when people don’t understand what it’s like to go through this every day. That’s why I  depend on my family, friends, and faith to get through. Healthcare costs and travels to UNC-Chapel Hill can be very taxing. I try not to focus on the negatives. That’s one of the reasons that I started sharing my writing on this site. As I minster and share my thoughts, I’m healing and encouraging myself. I’m thankful for your kind words and appreciation for  my writing.

God has given me this life for a reason and I know how precious life is. So while I yet live, I will be a voice of hope and inspiration. I’m managing as well I can with this disorder by doing my treatments and exercise. I hope that one day no child has to endure the hardships that I have faced with this rare disorder. You and others can help by donating to the PCD Foundation at http://www.PCDfoundation.org. Every dollar raised will go to help fund research and clinical trials to help us find treatments to manage the rate of debilitation this disorder has on the ears and lungs. I pray that my work on this blog will continue to bless you and thanks again for the love.

Stephon