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What is Cystic Fibrosis?
Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
Quick Facts about CF in the United States:
- About 1,000 new cases of CF are diagnosed each year.
- More than 75 percent of people with CF are diagnosed by age 2.
In people with CF, 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.
- Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s and beyond.
The Cystic Fibrosis Foundation
A nonprofit, donor-supported organization, the Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF. The Foundation funds lifesaving research and works to provide access to quality, specialized care and effective treatments for people with CF. Nearly every CF drug available today was made possible because of Foundation support. Through its efforts, the life expectancy of a child with CF has doubled in the last 30 years, and research to find a cure is more promising than ever before.
Our Family History with Cystic Fibrosis
Mark’s brother, Joe LeBlanc, was diagnosed with CF at age 5. Despite the prognosis of CF at that time (life-expectancy about 15 when he was diagnosed), Joe led a full life and actually defied all odds and competed as heavy-weight body-builder for many years! Joe lost the battle to CF a couple months before he was planning to get married at the age of 31. As a family, we all still talk about Joe often and miss him dearly.
Kate LeBlanc was diagnosed with CF at the age of 5 days old. She was the youngest patient to be seen at the Texas Children’s CF Clinic in Houston and was started on pancreatic enzymes immediately. She has been blessed with very few complications from the disease so far. She takes enzymes with every meal and does breathing treatments twice daily to keep her lungs as clear as possible.
Our niece Bridgette (aka BB) Truesdale was born only 6 months after Katie, but Mandy and Sean (who are on Michelle’s side of the family) did not know they were carriers for the CF gene when Bridgette was born. She unfortunately caught pneumonia a couple times soon after being born and then struggled with severe illness for the first year of her life. After testing showed she also had CF, she has been on pancreatic enzymes and breathing treatments as well. Just like Katie, she has had some scary moments (those nasty coughs can hit hard and strong!) but she is doing great right now.
We know that in the long run it will be a blessing that two cousins of the same age have CF and that the extended LeBlanc family is very familiar with CF from Joe. As they get older, they will be able to relate and bond with each other. The hardest part about this disease is that the “cross-contamination” is very strong, meaning that they easily share bacteria that tends to like the mucus particular to CF lungs. That makes it difficult (especially when they are young) to keep them from spreading germs to each other. That will change as they get older and they don’t immediately run and hug and kiss each other when they get together!
Lastly, an athlete that Michelle has coached for years, Debra Castell, also has CF. She was diagnosed in her early twenties. But Debra is a fighter! She doesn’t let the disease limit her and competes in running and triathlon events and is a 2 x Ironman Finisher! That being said, Debra definitely battles this disease and all of the challenges it brings with it. As her coach, I try to monitor her training to make sure she is staying healthy.