Real-Life Communication
A young woman, Ms. Carlson, has recently undergone genetic testing.
It shows she has the gene responsible for cystic fibrosis. She won't develop
the disease. However, any children Ms. Carlson has might develop it, if the
father also has the CF gene.
You are a genetic counselor. You write
letters to people who have been tested. In the letter, you cover the details
of the disorder they have. These letters are written using terms as simple
as possible.
"With patients, you have to be able to communicate at
a level of Grade 5 to 8, to make sure they understand," says Elizabeth Hoodfar.
She is a genetic counselor.
Read the following description of cystic
fibrosis. Then answer the questions at the end.
Cystic fibrosis
(CF) is a chronic, progressive and frequently fatal genetic (inherited) disease
of the body's mucus glands. CF primarily affects the respiratory and digestive
systems in children and young adults. The sweat glands and the reproductive
system are also usually involved.
On the average, individuals with
CF have a lifespan of approximately 30 years. A CF-like disease has been known
for over two centuries. The name was first applied to the disease in 1938.
According
to the Cystic Fibrosis Foundation, there are about 30,000 Americans, 3,000
Canadians and 20,000 Europeans with CF. The disease occurs mostly in whites
whose ancestors came from northern Europe, although it affects all races and
ethnic groups. It is less common in African Americans, native Americans and
Asian Americans.
Approximately 2,500 babies are born with CF each year
in the United States. Also, about one in every 20 Americans is an unaffected
carrier of an abnormal "CF gene." These 12 million people are usually unaware
that they are carriers.
Questions:
- What is cystic fibrosis?
- What part of the body does it affect?
- How common is the disease?
- What ethnic group(s) does it affect most?