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By: Meghan’s Mom, PCDF Founder Michele Manion
Getting the Diagnosis
In 1990, Meghan was diagnosed at the age of seven. By that time, we had run the gamut of specialists, false diagnoses, lengthy hospital stays, and ineffective therapies. Our finances were a mess, my personal life was in shambles, and we were at a complete loss as to what to do next. When we finally got the diagnosis, it was such a relief to have a name for what was wrong that it never occurred to me that there would be no specific treatment and little agreement about the prognosis.
Working as a medical research assistant and writer for a cardiac surgery group at the time, I had access to medical journal articles at the University of Minnesota. I immediately collected all the information I could find and created a PCD bibliography. However, much of the published material was contradictory or speculative. The clinical picture of PCD was far from clear. Partly, this was because researchers and physicians dealing with PCD were working in isolated pockets. There was no central rallying point for PCD research or treatment like the patient groups that had so successfully focused cystic fibrosis (CF) and alpha-1 (alpha 1) anti-trypsin deficiency research. I was more convinced than ever that we needed to organize.
Meghan racked up over 40 hospitalizations between diagnosis and age 18. As a single parent with two children, I was preoccupied with preserving Meghan’s respiratory health while trying to earn a living. The goal of starting and maintaining a PCD patient group was still important to me, but I didn’t see how I could manage my "real" life and still push for an organization. Plus, I had few contacts with other PCD families and wasn’t sure how to coordinate the effort.
A Lucky Break
In the late 90s I went to work in the clinical marketing division of Advanced Respiratory, Inc. (The Vest™ people). As it turned out, this position perfectly suited my background and interest in pulmonary health. I was "immersed" in mucus issues daily and I loved it! In this role, I communicated daily with patients and professionals representing a variety of disease states, including hundreds of PCD patients. Additionally, I had the opportunity to develop relationships with organizers from other patient groups and to get their advice. I also had the opportunity to attend major respiratory conferences and learned a great deal about pulmonary disease. Without exception the other non-profit groups agreed that the first step was to identify the "opinion leaders," the physicians and researchers most involved in research on PCD, and to arrange a meeting to garner their support.