She's in the fight of her life

By Cynthia Lee | Sep 27, 2005 Patient Stories

At a crowded press conference held Aug. 23 in the lobby of the new Neuroscience Research Building, California’s “big guns” from both political parties defended stem cell research from a new threat.

Senator Dianne Feinstein (D-Calif.) shared the podium with Gov. Arnold Schwarzenegger, Rep. David Dreier (R-San Dimas) and Los Angeles Mayor Antonio Villaraigosa to oppose legislation in Congress that would ban human cloning but also stop stem cell research in its tracks. Pro-research supporters are rallying ’round a counter measure introduced by Feinstein and Orrin Hatch (R-Utah) that would also ban human cloning but would allow stem cell research to move forward.

While supporters cheered the speeches, many rose to their feet, some blinking back tears, to applaud a young woman who spoke eloquently for those with the greatest stake in this battle of political ideologies, religious convictions and medical science.

“I am not a governor or a senator or a famous researcher,” said Candace Coffee, a UCLA graduate student in public health who has a rare and fatal autoimmune condition called Devic’s disease. “But this legislation is about me.”

If a cure is not found for her condition, she told the gathering, “it is likely that I will return to complete blindness, paralysis and the probability that I will die from respiratory failure. This is the truth I live with daily.”

Over the last two years, Coffee, 26, has gone public with her disease to convince California voters to back the stem cell movement. As a volunteer, she has given countless talks, wrestled with voters’ ethical questions, even made a TV commercial.

A former Miss Bakersfield with grand ambitions for a career on stage, Coffee once seemed to have it all: She won the Chancellor’s Award for Excellence in Undergraduate Research and a fellowship at UC Irvine and graduated with honors in international studies and dance.

“I was very self-focused, very directed to doing my own thing, building my résumé. It was always me, me, me,” she recounted. But the tables suddenly turned on her when she went to Tibet to do volunteer work and to travel.

“In one week’s time, I went blind in my left eye,” she said. After an infusion of steroids, she regained her sight only to later lose vision in her right eye. “A month later, I lost the left eye again as well as most of the use of my legs.”

A form of multiple sclerosis, Devic’s disease was eating away the myelin sheath protecting her central nervous system. For several months, she was totally blind, in excruciating pain and unable to walk without help. “I felt like I had a bad sunburn that was being scraped — my nerves were being exposed.”

Steroids brought her a remission, although she still contends daily with stabbing headaches, constant nausea, fatigue and pain. She remains blind in one eye. And she was later diagnosed with lupus.

Nausea or pain sometimes forces her to leave class. “All my classmates know that I’m just sitting on the floor outside the door, listening to the lecture,” she said. “Luckily, all my public health professors are understanding.”

Although Coffee said Devic’s has robbed her of spontaneity and her free-spirit lifestyle, it also gave her “a really good smack in the face,” changed her priorities and led her to a career in public health to serve others. After her diagnosis, she went to work for a muscular dystrophy agency, setting up a clinic and support group.

Her post-graduation dream now is to open a comprehensive care center for women newly diagnosed with chronic diseases, a place where they can learn how to live — and die — well, she said.

“Being sick is frustrating, and it makes me angry,” she said. “But at the same time, I’ve never been more at peace.”