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CLINTON, Ind. (AP) — Kierstin Ritchey may look like a typical teenager, but she has been dealing with a "quiet disease" all her life.
Diagnosed at 6 weeks old with cystic fibrosis, Kierstin, now 15, has a daily routine of therapy, medication and treatment, each one with varying purposes. Some are to help keep the infections down, others are to help her digest food and still some of her medications are to help with lung function. She also uses a "vest" and aerosol therapy to facilitate the clearing of mucus.
"I might look normal to you, but I'm really not," Kierstin said, "on the inside, I'm not."
"Our bodies are different and mine's ... really different on the inside," she continued.
Cystic fibrosis "is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide)," according to the Cystic Fibrosis Foundation, a nonprofit organization working to find a cure for CF.
According to the foundation, "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
"It's a really quiet disease," Kierstin said during an interview at her home in Clinton.
But this "hidden" sickness, as Kierstin's mom, Bonnie, put it, manifests itself in other ways. For example, Kierstin's labored breathing was heard in between her words, as well as a constant coughing or clearing of mucus.
In the last 20 months, Kierstin has been in the hospital about seven times for various reasons: CF flare-ups, pneumonia, lung infection, sinus, migraines and two sinus surgeries, Bonnie said. One of the main problems of her condition is lung damage. In March, when she was last sick, her lung capacity measured at 37 percent; her normal is 56 percent, Bonnie said. The normal for a person without CF is 80 percent to 100 percent.
"She just had a really rough year and a half," Bonnie said, as she sat in her living room sofa. She also missed a combined total of three months this school year.
Kierstin was born premature, weighing six pounds and one ounce. Bonnie and the doctors suspected a problem when the little baby started experiencing a viral respiratory infection that wouldn't go away. She also kept losing weight because her body wasn't digesting food, Bonnie said. Later, tests determined that Kierstin had cystic fibrosis. Even though Bonnie had no idea what CF was, she prepared herself for the task of helping her daughter.
But the hardest part of the experience was learning about her daughter's life expectancy. "That's what got me," she said. "Her life expectancy is ... age 37," she said. "That's hard to take when you see what you think is a perfectly healthy baby," she said with a solemn voice. "That's tough."
Though she was scared in the past, Bonnie has recently become more optimistic because of the advancement in understanding and treating CF. She said that a drug currently in development may help address the cause of CF. If it all goes well, Kierstin may be looking at taking the pill as early as 2017.
According to the Cystic Fibrosis Foundation, about 1,000 new cases of cystic fibrosis are diagnosed each year. The predicted median age of survival for a person with CF is the early 40s. More than 70 percent of patients are diagnosed by age 2, its website stated.
Unlike other diseases, CF does not pose dietary, physical or mental restrictions on Kierstin, Bonnie said. The freshman at Riverton Parke High School still happily engages in her favorite activities, including dancing and cheerleading. But she gets tired faster than her peers. "Sometimes I just have to slow down." She barely even noticed the effects of CF until she was in middle school, Kierstin said.
While Kierstin has learned to get used to the treatment routine and the impact of CF in her life, she doesn't let it stop her from living life to the fullest.
"I just know I need to have fun," she said with a smile. She gets her strength and motivation from the support of her family and friends, she added.
"She's a fighter," Bonnie said.
Both mother and daughter emphasized the importance of raising funds for research to find a cure. Bonnie encourages people to learn about CF and to support the research efforts. She hopes her daughter will not be shy about raising her voice to let others know about this "quiet disease."
In addition to Bonnie and Kierstin, others have been working tirelessly to educate others about CF. Tree Huxford has been involved with the Terre Haute Cystic Fibrosis Foundation. Her 22-year-old son, Justin, was diagnosed with CF when he was 7 weeks old.
She is passionate about raising awareness about CF.
"When people do not have a connection or do not understand about a disease that's not as well-known as (others) ... it's very difficult for people to donate and to help if they are not aware or informed," she said.
Huxford, chairwoman of the local Great Strides Walk, an annual event to raise money for CF research, said people can help by spreading the word, learning, donating and supporting the walk. She invited people "to join us."
She also encourages everyone to support the vision of finding a cure. With the promising development of an oral medication called Kalydeco, which is said to treat cystic fibrosis by targeting the underlying cause — a faulty gene and its protein product, CFTR — "we're really close," Huxford said. "We are on the brink of major breakthrough."
Source: Terre Haute Tribune-Star, http://bit.ly/1P3zqws
Information from: Tribune-Star, http://www.tribstar.com
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