Question:

I’m 24-years-old and I was just notified that I tested positive for CF. I’m very confused since I’ve had blood work done my whole life and never heard of this before . I asked my family and it’s never been found in any other family member. Can anyone help me?

Answer:

It is confusing and disturbing to receive a diagnosis of CF as an adult. There is no blood test that makes that diagnosis, so all of your previous blood tests for other things would not have been helpful.

Usually the test (a sweat chloride skin test) is done because a person is having problems such as sinus, digestive or lung problems that don’t improve as expected with treatment. CF can be present in a person even without a family history of it as it is a recessive genetic disease and may only appear rarely in families.

Another possibility is that, since your disease was mild or unusual enough that your diagnosis wasn’t made until age 24, other family members had CF but no one ever knew. With greater awareness of CF we are now seeing a number of adults with a new diagnosis of CF, just as you have.

The best thing that you can do to receive accurate information and to get cutting-edge excellent care is to arrange your care at a CF Center that is certified by the Cystic Fibrosis Foundation. These can be found on the CFF web site at CFF.org. I can’t stress enough to you how important that is.

It can also be helpful to consult a counselor to help with your adjustment to this change in your life. I wish you good health. There should be no reason that you can’t, with adjustments in your health care, continue to live the life you wish. Good luck.

For more information:

Go to the Cystic Fibrosis health topic.