The PCD Foundation is inspired by individuals living with courage, optimism and PCD. Read about some of them here — and share your own story.
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| Lynn's Story: Answers Can't Come Soon Enough |
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There are no translations available.
Like many people with primary ciliary dyskinesia (PCD), I was born with reversed abdominal and thoracic organs, (a condition called situs inversus totalis), but it wasn't until I was 9 (in 1979) that I was diagnosed with Kartagener syndrome, which is the name for PCD when reversed organs are present. Lung collapse of my left lung (anatomical right) after I fell on the playground showed bronchiectasis and I underwent lobectomy. This all happened before 'PCD' had been officially recognized as the cause for Kartagener syndrome er and no one knew much about it.
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| Conor's Story: A Life Cut Short |
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Escrito por Conor's Mother, Carey Kauffman
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There are no translations available.
I first learned about PCD 12 hours after my son was born. Conor was born a full-term, 9lb4oz "healthy" baby boy. After staying with us the first night, Conor couldn't seem to get rid of a tiny bit of congestion which led to a chest x-ray and a situs inversus totalis diagnosis. After telling us they had never seen situs before, they informed us that there was a 25% chance of Kartagener Syndrome. From that point, we heard a number of comments from the doctors that are concerning – if not alarming - in light of what would happen a few hours later:
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| Laura's Story: A Lifetime of PCD |
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Escrito por Laura Slaney and Michele Manion
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There are no translations available.
Laura Slaney has been dealing with the consequences of primary ciliary dyskinesia (PCD) her entire life. Diagnosed with Kartagener syndrome (a subset of PCD characterized by situs inversus) at age six, Laura brings the valuable insight of lifelong experience to the PCD patient group.
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| Meghan's Story: PCD Is What I Have, Not Who I Am |
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There are no translations available.
One of the adult members of our community who has lived with primary ciliary dyskinesia (PCD) her entire life and has watched two of her sister’s die from this disease sent a message to the attendees at this year’s PCD Family Day: ‘PCD is what I have. It is not who I am.’ I think this is a good description of how I view PCD.
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| Rylee's Story: Road to Diagnosis |
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Escrito por By Tori Eastvold, Rylee's mother
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My whole pregnancy I prayed for a healthy baby. On June 14, 2008 my perfect little baby boy, Rylee entered our lives. He was over 8 pounds and seemed perfectly healthy! That night I could barely sleep watching him breathe and thinking how precious he was. I had a cousin who died of SIDS so was paying extra attention to his breathing. Was his breathing fast or was it normal for a new baby? How should a newborn baby be breathing?
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