Cystic Fibrosis Facts..

Here are some facts and statistics I've collected over the last few days..

Every year, 1,000 children with cystic fibrosis (CF) are born in the United States. One in 3,000 Caucasian babies have the disorder, making CF one of the most common lethal genetic diseases in Caucasians. Overall, there are 30,000 Americans with CF, and an estimated 8 million people carry one copy of the defective gene that causes the disease.

On life expectency:

• In the 1980s life expectancy of people with cystic fibrosis was 14 years.
• 10 years back, the life expectancy of a person with cystic fibrosis was around 18 years. Today it is 35 years.
• The median life expectancy of a newborn with cystic fibrosis has increased from 4 years to 32 years. It has been estimated that there has been more than 10 year increase in the average life expectancy of affected people in North America.
• Over 90% of the affected infants now survive beyond one year. Studies show that life expectancy of children will exceed 40 years.
• Life expectancy of individuals with adequate pancreatic function can be more than 50 years.
• In the United States, approximately 30,000 people have cystic fibrosis. Around 1,000 new cases of cystic fibrosis are diagnosed each year. One child of every 3,500 is born with cystic fibrosis.
• In Canada, the overall cystic fibrosis birth rate from 1971-1970 was stable. From 1988, cystic fibrosis birth rate increased to a rate of 1 in 3,608. Cystic fibrosis birth rate is stable for the last few years.
• In the UK, cystic fibrosis birth is about 1 in 2400 and 4% of the people are cystic fibrosis carriers.
• 80% of patients are diagnosed by the age of three. 10% of patients are diagnosed at the age of 18 and 3% patients are diagnosed in adulthood.

 Canadian CF Facts:

One person dies from cystic fibrosis in Canada each week

Of the 40 patients that died in 2010, half were under 26 years old

One in every 3,600 children born in Canada has cystic fibrosis

60% of people with cystic fibrosis are diagnosed in the first year of life, and 90% by age 10

Approximately 4,000 individuals with cystic fibrosis attend one of the 42 specialized cystic fibrosis clinics across Canada

Cumulatively, CF patients spent over 20,000 days in hospital and attended nearly 15,000 clinic visits in 2010

One in 25 Canadians carries a defective version of the gene responsible for cystic fibrosis

More than 1,800 mutations in the CFTR gene have been identified, however nearly 90% of individuals with CF in Canada carry at least one copy of the most common CF-causing mutation, ΔF508

In the 1960’s, most children with cystic fibrosis did not live long enough to attend kindergarten

Today, half of all Canadians with cystic fibrosis are expected to live into their 40s and beyond

Nearly 60% of all individuals with cystic fibrosis in Canada are adults

85% of individuals with cystic fibrosis must take pancreatic enzymes to digest food and absorb nutrients

31% of female adults with cystic fibrosis and 19% of male adults with CF are classified as underweight

44 CF patients received transplants in 2010, more than double compared to a decade ago

Nearly half of all patients with cystic fibrosis are infected with harmful bacteria such as Staphylococcus aureus and/or Pseudomonas aeruginosa in their lungs

14% of all individuals with CF have CF-related diabetes (CFRD), and more than one quarter of CF individuals, 35 years of age and older, have CF-related diabetes