Just a few weeks after our son, Max (our first), was born in 1995, I attended CFRI's annual Educational Conference. My wife and I had done our best to inform ourselves after Max's in utero CF diagnosis at 20 weeks. Information received from CFRI by mail had helped us to see the hopeful side of this sudden change in our lives. But the conference itself was a revelation.
Early in the first day, my appreciation of the variability of the effects of the condition was deepened by the contrasting personal histories of, on the one hand, relatively healthy adults with CF, and on the other, parents of infants who were already struggling for their lives. Later, it was startling to hear detailed discussions of methods of treatment that our personal doctors had only vaguely referred to as "continuing developments." I found myself frantically scribbling notes, straining to absorb new terminology and information.
At lunch that first afternoon, I shared a table with a young man who was waiting for a lung transplant and listened to his memories of childhood with CF. The next day I sat with IACFA members and listened to their comparisons of CF treatment in Europe and the US. I remember, too, being especially struck when, during one physician's presentation, several parents shot their hands up with questions about an aside the speaker had made concerning symptomatic indications of zinc deficiency. It was clear that they had just been given an answer to a question that neither they nor their physicians had thought to ask before.
Pervading all the proceedings was the sense that living with CF requires us to be extremely well informed so as to be strong advocates for effective care. Shortly after that conference, my family moved to Southern California. We found ourselves educating our new doctor on the latest developments in CF treatment. In the light of our newly acquired knowledge, his general approach seemed disturbingly passive. We argued with him about the proper response to infection if and when it should develop. Though he stated that he would not prescribe any treatment that was "experimental," he agreed to read whatever studies we could arrange to send to him. As it turned out, Max's health remained remarkably good, so the issue never came to a head. We decided to skip the conference the following year. This year's conference proved to be as illuminating as our first, and we realize with regret how much we missed as a result of our complacent attitudes. Dr. Stern's comment (see page 8 for a summary of his talk) that if you are not in the care of a research hospital you are probably not getting the best care available really hit home. And listening to Dr. King's presentation (see page 10 for a summary of her talk), the same general theme was repeated.
As a patient or parent, you need to be so well informed as to be able to discuss the specifics of procedures or treatments that are proposed to you, and offer detailed alternatives when appropriate. CFRI's annual Conference gives members of the CF community invaluable access to that type of information, and perhaps more important, face-to-face contact with others who share our struggles and concerns.
Return to Fall 1997 Index Page