OAKLAND -- Chayla Fisher wants to bring ulcerative colitis (UC) and Crohn's disease out of the closet.
The 16-year-old Oakland hills resident was diagnosed with UC when she was just 8 months old -- the youngest patient ever diagnosed at the time.
UC is a chronic autoimmune disease in which the lining of the colon becomes inflamed and ulcerated, causing abdominal pain -- and frequent trips to the bathroom. Crohn's disease differs from UC in that it affects not just the colon, but any part of the digestive tract, including the mouth.
"It can be really debilitating," said Fisher, who has been on various medicines for the disease, including steroids. "Sometimes my stomach hurts so much I just lie down and curl up in a fetal position."
In June, Fisher ran and walked a half-marathon in Napa with Team Challenge, an organization that raises funds and awareness about UC and Crohn's disease -- and was also invited to be the guest speaker at the pasta party the day before the race.
"Colitis and Crohn's disease should no longer be bathroom diseases, we need to come out of the stall and let our voices be heard," said Fisher in a speech to about 1,200 people.
Rick Geswell, president and CEO of the Crohn's and Colitis Foundation of America (CCFA), attended the Napa half-marathon and heard Fisher's speech.
"I deal with a lot of young patients, but Chayla is the strongest young voice I've heard in my eight years as CEO of CCFA," Geswell said. "She's confident, expressive and understands the disease completely. She is committed that ulcerative colitis won't control her life or hold her back. Chayla got a standing ovation at the end of her speech -- people were inspired by her story and her strength."
Geswell was so inspired that he decided to enter the Napa race himself, even though he hadn't been training.
"After hearing her speech, I thought, 'How could I not do it?' " he said.
Fisher said a lot of people don't know about UC and Crohn's disease and some underestimate how difficult it is to live with UC.
"People don't want to talk about these 'bathroom diseases,' " Fisher said. "People find it embarrassing to talk about poop and things like that."
Patients with UC experience abdominal pain and diarrhea, as well as fatigue and depression. Fisher has always had to watch what she eats.
"I never eat any dairy products such as milk, ice cream or cheese because those always upset my stomach," said Fisher, who also avoids greasy foods. "When I went to birthday parties as a child, I always wanted to eat the pizza and ice cream. Kids would say to me, 'Why can't you eat normal food?' and I'd just tell them I have an allergy to dairy."
Although Fisher takes medicines to help control the disease, she's trying to stay off a standard treatment for UC -- the steroid Prednisone. When she got sick in eighth grade, her doctor prescribed the steroid -- which caused Fisher to gain 50 pounds within one month and develop a "moon face."
"My friends asked me why I'd gained so much weight and what was happening to my face," Fisher said. "Being in middle school with a moon face and 50 extra pounds was horrible. I was so self-conscious and embarrassed. I would go home every day, look in the mirror and cry."
That same difficult year, Fisher discovered Team Challenge and began training for her first half-marathon.
"Through Team Challenge, I met a ton of people who were going through the same thing that I was. I no longer felt alienated or alone with my disease," said Fisher, who found out about the organization at a symposium at UC Davis. "I decided that day that I was going to raise $5,600, and I ran my first half-marathon in Hawaii four months later."
Although Fisher said her condition has worsened over the past few months and her doctor has suggested stronger medication, the Berkeley High School junior just tries to push through.
"I'm very tenacious and don't give up on things I'm passionate about," she said.
This summer, she's working at a children's day camp in Oakland. She also plays soccer at Berkeley High and does a lot of volunteer work with CCFA, sharing her story at Team Challenge meetings.
Fisher's mom Kim said her daughter is a fighter, but that it's hard to watch her suffer.
"As her mama bear, I wish I could take the pain for her and would give anything if she could be well," said Kim, who has spent long hours researching the disease and coming up with foods that her daughter can enjoy and tolerate. "I believe we all have to be proactive and ask questions of doctors and research treatment options. We are now faced with decisions around Chayla taking stronger medicines called immunosuppressants. This is hopeful and scary -- when your immune system is suppressed, you become vulnerable to other infections and diseases."
She said she wishes the family had found CCFA sooner.
"The network of people of all ages and experience with the disease is invaluable," she said. "CCFA takes some of the burden off friends and immediate family and it's a wonderful group of people."
Chayla Fisher said she's considering a career in the medical field -- perhaps as a chemist or a therapist for patients with UC and Crohn's disease.
"I hope to see a cure for ulcerative colitis and Crohn's in my lifetime," she said.
For information on the Crohn's and Colitis Foundation of America, go to: http://www.ccfa.org. For information on Team Challenge, go to: http://www.ccteamchallenge.org. To help Chayla Fisher with her fundraising goal of $5,600 for CCFA, go to: http://www.active.com/donate/napaNCASFEB14/rowanandchayla