A dozen or so students with cystic fibrosis have arrived at Stanford during the past 20 years. Some of them, like Leslie Hotson, died before they could graduate. All of them endured physical and emotional ordeals during college.
Their struggles often involve the most basic human activities—eating and breathing. CF produces secretions that plug the lungs, inhibit digestion and make patients vulnerable to a host of infections. And the disease carries with it social indignities that can lead to embarrassment, loss of confidence, even shame.
Richard Moss, professor of pediatrics and director of the Cystic Fibrosis Center at Lucile Packard Children’s Hospital, says college-age CF patients take a barrage of medications and spend one to two hours per day undergoing respiratory treatments, often using pneumatic vests that vibrate the chest to loosen mucus.
They are dogged by a heavy, phlegmatic cough that’s particularly troubling for students living among their peers. “They’re noisy, they’re bringing up stuff—it can be very embarrassing for them,” says Moss. “Some students I’ve known have requested single rooms because they were worried about imposing on other people.”
Intestinal dysfunction is the other major problem. CF secretions prevent digestive enzymes in the pancreas from reaching the intestines, leading to malnourishment, chronic bowel difficulty and stunted physical development. Students with CF can be as much as two years behind their peers in their sexual maturation, says Moss.
Put together, he says, “That’s a pretty heavy stew of problems for a kid in college. It’s hard enough being a Stanford student without having to deal with all of that.”
Treatment advances in recent years have extended and improved the lives of CF patients, primarily through inhaled medicines that thin mucus and keep infections at bay.
Researchers are attacking the source of the disease as well as its symptoms. Stanford is conducting experiments using genes manufactured from recombinant DNA to replace the malfunctioning gene that leads to CF. These genes, copies of those that keep a healthy person from developing CF, are placed inside a harmless viral particle and administered to the patient via an aerosol cloud. After inhalation, the viral particles enter cells lining the airways and spread the genetic payload that counters the development of CF symptoms.
Moss, whose team of physicians usually plays the role of primary care provider for students with CF, says it’s rare nowadays for the illness to prove fatal for a college-age patient. “Most of the students we see are reasonably healthy,” he says. “Leslie [Hotson] was unfortunate to have had very serious lung disease quite young.”
