I paused and peered over the microphone at the audience. My first words were “I thought you’d never ask.” And I meant it. My lecture at Stanford University was not conceivable two decades ago. But last week was different.
The Most Common Genetic Disorder in America
The audience was filled with cystic fibrosis patients. Cystic fibrosis is a common inherited disorder that is due to a defective gene that results in abnormally thick and sticky mucus. The mucus builds up in lung passages and elsewhere and results in life-threatening lung infections and digestion problems. Cystic fibrosis are uniformly disabling and deadly.
In 1959, a child with cystic fibrosis survived an average of 6 months. In 2008 cystic fibrosis patients lived an average of 37.4 years. Recent data also show that 40% of adults with cystic fibrosis are married or partnered. As they live healthier and longer, the minds of cystic fibrosis patients naturally wander to thoughts of the birds and the bees.
The Birds and the Bees: Fertility and Cystic Fibrosis
The Stanford Cystic Fibrosis Center asked me to speak about fertility and cystic fibrosis. Absolutely my honor. The fact that these patients are now old enough and strong enough to contemplate having children is a testament to advances in medical care and their personal fortitude. The message of my talk was that fertility is possible in both sexes and is even pretty close to normal in affected women. In fact, 240 American women with CF were pregnant in 2008. Men with cystic fibrosis tend to be missing parts of their reproductive tracts and require sperm retrieval (and their partners assisted reproduction) to become fathers.
Dying for What You Believe
As I was preparing my talk, I was overcome when I learned that simple childhood sniffles or sleepless nights can be life threatening to cystic fibrosis parents. The fabled nurturing instinct to care for their young, the sheer essence of parenthood, present throughout animaldom, can be a lethal reflex for cystic fibrosis parents. Add this to the normal heroic effort needed to raise children and you find yourself staring down the very definition of the words “commitment” and “courage.” That’s why I was honored, and frankly inspired, to speak that day and will be honored to speak again. Because, in the words of Lao Tzu, the ancient Taoist philosopher: “being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”