My name’s Ashley, I’m 24 from Michigan, and I was just diagnosed with PCD (without SI) 2 weeks ago. I also have two immune deficiencies: hypogammaglobulinemia and Specific Antibody Disorder! I don’t make antibodies to Staph or Pneumonia.
After a looooooong and challenging road, I am finally getting some answers (and treatment!) thanks to an amazing immunologist at the University of Michigan. She orignally came from Hopkins, and has never diagnosed anyone with PCD before, nor had the associate professor of Otolaryngology (the ENT that performed the biopsy and requested the EM).
I’d love to speak to and get to know others with this. How long has everyone been diagnosed with it? If you didn’t have SI, how long did it take to diagnose? How does it affect your QOL?
Thanks everyone!
Ashley (PCD w/o SI)