Cystic Fibrosis awareness

It started with thin hair, a poochy stomach and even pneumonia. But 25-year-old Odessan Amanda Wood’s parents didn’t finally learn the diagnosis of cystic fibrosis until she was 2.

She’s not alone.

CF is a disease impacting about 30,000 across the country, and a local chapter of the Cystic Fibrosis Foundation tries to raise money and get the word out through a yearly walk in October and other events, including an annual Christmas party scheduled for Saturday for family, friends and walk team members.

The disease is genetic and both parents have to carry one of the genes for a person to get CF. The gene causes an unusually thick mucus to fill up parts of the body, such as the lungs and pancreas.

As a result, Wood said the disease causes lots of complications.

"You get lung infections easily and have to go into the hospital at least once a year for a ‘tune-up’ hospital stay," she said.

Those tune-ups can last for two weeks or longer and some have to get them done multiple times a year.

The mucus can lead to people easily getting lung infections, interfere with food digestion and even harm the liver because of the medicines taken.

Wood said she has to take four pills every meal and also eat more than the average person, 5,000 calories a day. She also has to go through breathing treatments every four hours (each lasts about an hour by itself) and go through a treatment where a person pounds on the back and stomach to try to break up the mucus daily. She said a group in the walk lost a sister from CF this year.

"She was 25, my age … and she’s gone. It’s important to raise awareness and any kind of funds we can," Wood said.

CF is often deadly, with the average life expectancy hovering just above 30 years old but increasing.

"When I was a kid, it was 12," Wood said.

Great Strides walk event chair Kay Holmes said the group only started three years ago largely to increase awareness after her daughter Kaylie was diagnosed. She said the closest doctor to specialize in CF is in Dallas, so medical care can get quite expensive.

This year’s walk raised $11,000 and doubled last year’s participation, with 13 teams instead of just six. Because of the small number of cases, the government doesn’t give money to the CF Foundation. The Jackalopes hockey team also auctioned off jerseys for the cause, and the Christmas party will include some fundraising through sales. Wood said even innocent events like the Christmas party can be dangerous.

"If I have something and cough, everybody else will get it because we’re so susceptible," she said.

Vikki Martinez got emotional when describing her 3-year-old daughter Viviana’s fight with CF. She was first diagnosed when she was 6 months old.

"She was drastically losing weight, deteriorating right in front of me before we found out," she said. "We’ve got to raise money and find a cure."

IF YOU GO

>> What: Cystic fibrosis group Christmas party.

>> Who: Family, friends and team members from the Great Strides cystic fibrosis walk.

>> When: 3 p.m. Saturday.

>> Where: Shout cheerleading, 2923 E. Business 20.

SPONSORSHIPS

>> The local cystic fibrosis foundation chapter is looking for additional corporate sponsorships to raise funds to fight the disease.

>> Call Kay Holmes at 208-3942.