
Jeremy Kharrazi, 17, is the envy of his classmates. He has great friends, top grades and plays varsity in several sports. From outside appearances, it's impossible to tell he has faced major health obstacles in his life.
The senior at the Alameda Community Learning Center has cystic fibrosis (CF), a common yet severe inherited disorder in which an abnormal gene causes a defective chloride channel in many tissues of the body. The result is inflammation, infection, thick mucus and tissue damage throughout the lungs, pancreas and digestive system.
At one time CF was a fatal disease of childhood; now more than half of patients are surviving into their late 30s and beyond, according to Dr. Mary Ellen Kleinhenz, director of the UCSF Adult Cystic Fibrosis Center.
While some may wallow in self-pity, Jeremy wakes up every morning with a positive attitude. He is committed to an extremely active lifestyle and manages his disease several hours a day. His daily routine includes chest physical therapy to loosen mucus in his lungs, taking inhaled medications, antibiotics, digestive enzymes and bronchodilators.
"I lift weights three times a week and ride my bike to work everyday," adds Jeremy. "I think that's why I have a good attitude about managing CF — knowing that exercise is what mainly keeps me healthy." He also plays water polo and Ultimate Frisbee while achieving more than a 4.0 grade point average.
As one of five children, Jeremy was diagnosed with CF at age three after a long and frustrating series of misdiagnoses. Rather than feel defeated by CF, Jeremy's father Martin, an epidemiologist, began working with the Genetic Disease Branch of the California Department of Health Services on developing CF newborn screening.
Martin has been instrumental in developing a new statewide screening program that began in July 2007 to diagnose CF at birth and begin early treatment. "It is immensely satisfying to me both personally and professionally to know that in the future approximately 100 newborn Californians with CF and their families each year will be spared the often hard and health-damaging road of a delayed CF diagnosis because of CF newborn screening," Martin says.
Despite receiving a late CF diagnosis, Jeremy and his family continue to thrive thanks to Jeremy's dedication to managing CF and the treatment he gets at UCSF. "We have been very appreciative of the care we have received at UCSF and feel that we have all worked as a team to provide Jeremy with the best we could all offer," his mother Lisa says.
Jeremy's providers at UCSF — Dr. Gerd Cropp, Dr. Dennis Nielson and clinical nurses Diana Dawson and Debbie Lallas — have all been impressed with Jeremy's maturity, full life and commitment to his lifelong treatment regiment.
"A chronic illness can be daunting at times for anyone, but particularly for a teenager," Lallas says. "It can be easy to get discouraged and angry. Jeremy has risen to the challenge by striving to do everything he can to maintain and improve his health. He has been determined not to let his disability hold him back."
In addition to Jeremy's dedication to reaching his personal best in academics, athletics and health, he is also a lifeguard, a swimming instructor and co-president of his local Junior Statesman of America chapter. He has traveled to Cuba and Israel, climbed Mount Shasta and Half Dome in Yosemite and is now preparing to leave home for college next year. He is also committed to community service, participating in clinical trials to further CF research and in fundraising events for the Cystic Fibrosis Research, Inc. and Cystic Fibrosis Foundation.
Recently Jeremy won the prestigious "Heroes of Hope Living with CF" program award from Genentech Inc. He was chosen from a nationwide pool of candidates for his ability to inspire others with CF through his determinant positive attitude, commitment to health, and community outreach and achievement. A ceremony in his honor was held at UCSF, where he was surrounded by proud family, friends and his medical team.
His father Martin remembers his son's passion for life from the start. "Jeremy both pre- and post-CF diagnosis has been a dreamer with a zest for life and a forgiving disposition. He wants to live life fully like others of his generation and sees the world through 'healthy' eyes." Martin says. "All and all, he's a regular teen, part adult and part child, who happens to have CF."
Story written in August 2007.
Erica Holt is a freelance writer in San Francisco.

Cystic Fibrosis Center
400 Parnassus Ave., Second Floor
San Francisco, CA 94143
Appointments: (415) 353-7337
Office: (415) 476-2072
Fax: (415) 476-9278