I was born with Primary Ciliary Dyskinesia, a rare genetic disorder that causes missing or malformed cilia. Cilia are microscopic hair-like structures that help clean and filter the inner surfaces of the respiratory system, sinuses, ears, and reproductive system. So basically, I have no filter for my respiratory system!
From the moment I was born, everyone knew there was something wrong with me; therefore, the first month of my life was spent in the hospital. I had a runny nose, a hard-time hearing, and a serious cough. Throughout the years, I was in and out of different doctor’s offices and they couldn’t conclude what was causing my symptoms. Then after ruling out Cystic Fibrosis, my doctors gave up and convinced my mother and me that it was just asthma or allergies. Therefore, they told us that I would eventually grow out of it. This gave me hope of being “normal” someday, but unfortunately, I went untreated and undiagnosed for a long time.
My symptoms continued and after a series of testing, a pulmonologist diagnosed me with something called Primary Ciliary Dyskinesia. I can remember that day vividly, I remember asking him if I would still “grow out of it” because I was trying to find some hope. When he told me no, it felt like someone punched me in the gut. I tried to fight the tears and the reality of having to deal with this the rest of my life. I mourned the fantasy of living a life without being sick; I just wanted to be “normal”.
Despite being diagnosed with PCD, my disease was not treated properly. When I was 11, my lungs got progressively worse and I ended up in the ICU in Long Beach Miller Children’s Hospital. I can remember spending 3 months in isolation, 3 months of being observed by strangers behind masks, and 3 months of losing hope. However, during this time, I met Dr. Smith (not real name). He was the only doctor who had the confidence to do anything about my situation. He explained to me thoroughly what PCD was and began to treat me. It’s safe to say, he saved my life.
Unfortunately, all the years of having reoccurring pneumonia and bronchitis destroyed the right lower lobe of my right lung. That area became so scarred and infected that it was non-functional. My doctor tried to save my right lung with 2 years of in-home IV antibiotic treatment through a PICC line. This didn’t work, so I was sent to CHLA to have a lobectomy (partial lung removal) at age 15. I’m proud of the scars that I have from that day; it reminds me of how strong I am capable of being. In fact, I’m proud everything PCD has put me through no matter how painful it was.
It took me a while to learn that my illness does not define me.
I finally accepted the fact that I would never have a “normal” life. I looked up normal in a dictionary and it was defined as “the usual, average, or typical state.” When I was younger, I wished to be average for years. But I’m happy my wish never came true because I am more than just average. After my lobectomy, I made a promise to myself to never let my illness define me. I didn’t wish to be average anymore, I wanted to be more than that. Therefore, I stopped making excuses and chased after anything I had an interest in. I learned how to play the cello, I learned how to speak 4 different languages, I learned Archery, I practiced martial arts for years, but most importantly, I decided to major in Biology. I want to be a doctor I wished I had when I was younger before meeting Dr. Smith (not real name). I want to be a doctor that doesn’t give up on their patients. I want to help people diagnosed with PCD, but ultimately, I hope I can find a cure for PCD or contribute to an alternative treatment that is better than what we have now. When I was younger, I was told I wouldn’t live past 18. I am currently 21 and continue to live my atypical life. However, I am not the perfect person. I have failed numerous times; whether it’s in school or in my hobbies. But one thing I learned was to get up and try again. I learned how to keep going whenever my life got tough. I don’t want someone to remember me as a girl with PCD, I want to be remembered as a warrior that made a difference in our world.
My techniques to help me move forward is practicing self-care and learning from my experiences. My advice to anyone struggling with PCD is to never skip treatments and medications so that you’re able to go out into the world and strive towards your dreams, whatever they may be. Also, remember that this illness does not define you but only makes you stronger.
