Be direct about cystic fibrosis info

Dear Amy: Genetic testing shows that my son and I are cystic fibrosis carriers. Our research shows that most carriers are asymptomatic, as I am, but my son has pulmonary issues, which is why the testing was done.

I’ve asked my parents to be tested so we can determine which side of the family the recessive gene mutation comes from. When the results come back, I feel we have an obligation to inform that half of the family.

If a CF carrier has a child with a CF carrier, they have a 25% chance, with each pregnancy, of having a child with full-blown cystic fibrosis, a debilitating and life-threatening disease.

How do we gently share this without causing unnecessary stress or drama?

Loving Family Member

Dear Family Member: I shared your letter with Laurie Fink, spokeswoman for the Cystic Fibrosis Founda- tion (cff.org), who confirmed your take on this disease. She tells me that your situation is not all that rare: One in 30 Americans is a symptomless carrier of the CF gene mutation.

In your approach with other family members, be straightforward, completely honest and neutral. Give family members access to the same resources you used to pursue testing.

You are generous to share the results with family members. They will decide on their own whether they want to be tested. The Cystic Fibrosis Foundation wants to spread the word that there is more hope than ever before for people with this disease. The life expectancy for a child born with CF has doubled in the last 30 years.