Imagine sitting on your couch and feeling like you are running a mile.
Imagine having to stop halfway up a single flight of stairs to catch your breath.
Imagine not being able to sing along with the radio because your lungs can't keep up.
Imagine having the lungs of an 85-year-old at 25.
This is Primary Ciliary Dyskinesia.
My brother-in-law, Adrian, was diagnosed with PCD at the age of eight. Since I met him 10 years ago, I have seen him through hundreds of doctors visits and hospital stays, brain surgery, acquiring an oxygen tank, and the insertion of a port into his chest to make the frequent antibiotic treatments easier.
Primary Ciliary Dyskinesia is a rare genetic disorder of the cilia. Cilia are basically little hairs in your body on the surface of cells that keep bacteria out of places it would otherwise collect in. Some cilia move, others do not. However, the cilia in Adrian and those with PCD do not function properly. The biggest symptom they face because of this is chronic lung infections. It also affects the sinuses and the ears. Only an estimated 25,000 Americans suffer from the disease, with about 400,000 world-wide.
The effects of PCD on day-to-day living is different for each individual. For Adrian, he sleeps with an oxygen tank every night and has to walk any sort of incline or do any heavy-lifting incredibly slowly. On bad days, climbing a flight of stairs could mean taking two breaks - one halfway through and the other one as soon as he gets to the top.
For medication, he consistently takes antibiotics and is supposed to do breathing treatments every day, along with chest therapy, which is a vest that vibrates to basically knock the crap in his lungs loose.
Not only does this affect day-to-day life, it also affects the things in life that those with PCD are able to enjoy. Once, while in the mountains of Colorado, I watched as Adrian's face turned grayer than a corpse, and I thought he was going to die right in front of me. His oxygen levels became dangerously low in seconds simply because of the altitude. With the help of copious amounts of coconut water, things became better, but the altitude was still not easy for him by any means.
PCD is a disease that is highly unknown. Many people with PCD get misdiagnosed with Cystic Fibrosis. Without the correct treatment, individuals with the disease can suffer from serious lung, sinus, and ear damage. October is PCD awareness month. You can help by staying informed, donating, and telling others. I, Adrian, and his PCD community thank you for your support!Imagine sitting on your couch and feeling like you are running a mile.
