Primary Cilia Dyskinesia (PCD), The disease nobody has heard of.

The story of Samantha

The year is 2006 and my mom reprimands me for not having taken my medication, I burst into tears and tell her that I do take my medication. At 14 I was taken to yet again another doctor that would say or so i thought ….that I have really bad allergies and Asthma that seems to be caused by everything in the whole wide world. This however did not turn out to be the case. I met my guardian angle in the form of an 80 year old ENT named Dr James Callahan. He took one look at me and immediately sent me for a lung biopsy that turned into a lobectomy. If not for him I would not have seen the end of my first year of high school. I had been diagnosed with Primary Cilia Dyskinesia. After an extended stay in the hospital , I was sent home with a new set of “rules” for how my life was to be lived. Thanks to an amazing team of doctors and a mother that never gave up on me I have been able to live a relatively normal life especially since i keep outdoing their expectations.”She won’t see her 18th birthday” was what one doctor told my mom. I can proudly say i turn 24 this year. I have managed to get into one of the best universities in the country, I have kept on taking part in the sports that i loved before I became ill. I have made and lost friends. It is quite hard to explain to people what is wrong with me when every time we meet up it sounds like i have a really bad flu or a smokers cough…nobody knows what PCD is. But life goes on and I PROMISE TO MAKE THE BEST OF EACH DAY GIVEN TO ME.

 

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