5 Facts About Cystic Fibrosis
May is Cystic Fibrosis (CF) awareness month. Since my partner has CFTRΔ508, this month is extremely important to my family (and, of course, my future family-in-law). CF is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure for CF. The degree of severity differs from person to person but typically loss of lung function is the leading cause of death in the majority of CF patients. To raise awareness for CF, I thought I would share 5 CF facts with you guys today.
The following information came from CF Canada (one of the world’s top 3 charitable organizations committed to finding a cure or control of CF). Their mission is to end CF. They will help people living with CF by funding world-class research, advocating for high-quality personalized CF care by raising and allocating funds for those purposes. CF Canada’s vision is “a world without cystic fibrosis” which is a common hashtag you will see on Instagram and Twitter.
Fact #1: It is estimated that 1 in every 3,600 children born in Canada has CF.
More than 4,100 Canadian children, adolescents, and adults with CF attend specialized CF clinics.
Fact #2: In 2013, half of Canadians newly diagnosed with CF were under the age of 6 months.
This is an important number to the CF community as many people were not diagnosed with CF until a later age. My boyfriend, in particular, wasn’t diagnosed until he was 9 months old. I have read stories of people not finding out until they were in their 30s or older. Discovering CF in children is so important. This is why we need to advocate for newborn CF testing.
Fact #3: CF is a multi-system disease that produces a variety of symptoms.
These symptoms include persistent cough with productive thick mucous, wheezing and shortness of breath, frequent chest infections (which may include pneumonia), bowl disturbances, weight loss or failure to gain weight, salty tasting sweat, and fertility issues.
Fact #4: People with CF have unique challenges with fertility.
Women with CF are often able to naturally conceive but it can take longer to become pregnant because it is believed that thicker vaginal mucus makes it more difficult for sperm to travel and fertilize an egg. Men with CF are usually infertile. In most CF men, sperm is produced normally but the vas deferens is blocked or absent, preventing sperm from reaching their destination. For these men, reproductive technologies can be used to pro-create.
Fact #5: CF is a genetic disease (Chronic illness) that occurs when a child inherits 2 abnormal genes, one GENE from each parent
Approximately 1 in 25 Canadians carry an abnormal version of the gene responsible for CF. Carriers do not have CF nor do they exhibit any symptoms of the disease. When 2 carrier parents have a child, there is a 25% chance that the child will have CF and 25% chance that they will be completely unaffected by CF or the gene. The other 50% of the time, the child is also a CF carrier. This is why I need to be tested for the CF gene because the likelihood of having a child with CF with a CF partner is very high. Luckily, with reproductive technologies, you can test the embryo for CF before implanting it to avoid having a child with CF.