The third annual Great Strides Cystic Fibrosis Walk will be held next Wednesday, October 24, at 4:30 PM in Key Park. Hosted by MCGH and organized largely by Stacey Brawner, it benefits research at the Cystic Fibrosis Foundation.
Just what is cystic fibrosis? The following information is courtesy of CF Foundation’s website:
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). 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.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
People with CF can have a variety of symptoms, including:
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• difficulty with digestion system
Statistics
• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the late 30s.
Little Marisa Wade, 11, could be considered the face of cystic fibrosis in Macon County. The daughter of Alicia Wade and David Roark, she is a pretty, shy student in the 6th grade at Macon County Jr. High. Her CF symptoms showed up for the first time when she was just an infant.
“It’s different with every person with CF,” said mother, Alicia. “She started getting back-to back upper respiratory infections when she was about seven months old… it’ll show up with lots of lung infections, failure to gain weight.”
Marisa’s treatments are ongoing; she takes a laundry list of drugs, most of which her mother gets through the Cystic Fibrosis pharmacy. She usually goes to Vanderbilt CF Clinic about every month.
“She’s on IV meds right now; we just stayed a week in the hospital and then they let her stay home for a week. She gets one of them at 6 in the morning, and then noon, and then six in the evening, and then midnight. A different one at 3 in the afternoon—and each one runs for about thirty minutes.
“I added up her drug costs one time and it’s roughly $25,000 a month. If she didn’t have Tenncare [Select], I honestly don’t know what we would do; I don’t work, I stay home with her. Because even though she goes to school, she’s home quite a bit.”
This is the third year MCGH has hosted a Great Strides Walk, and the Wades have been present each year. The first year, Marisa was asked to be a guest of honor. Alicia says that it has personally given her an outlet to actively battle the disease that has become such a big part of their family life.
“I’ve wanted to (get involved) for all these years; I just didn’t know what route to take. And I’m not really one to just jump into something.
Last year’s walk, which landed on a cold and rainy day, saw a somewhat sorry attendance. This year, weather permitting, organizers hope that the turnout will be more generous. Wade had one last personal note to make for those who have already given to the cause:
“This is the first year that I’ve actually gone around and have been asking for donations. And I would just like to thank everybody that has donated. Because… the money that they give could be the money that ends up saving her life, or making her life better. So I just want everybody to know that I really appreciate it.”
Post a Comment
