Comments on: Cystic Fibrosis – A Genetic Disease. How long can one live with it?

By: BK

BK — Sat, 10 Oct 2009 11:54:09 +0000

My sister died of Cystic fibrosis at age 20 in 1963. She was never correctly diagnosed while she was alive, but did manage to go to high school until her senior year. My brother died at age 32 in 1986 after starting treatment at age 11 in 1964 (when my sister died we all got tested). He got married at age 24, bought a home, took in a foster daughter, and worked at an auto parts store from about age 18 until he was 29, when he couldn’t work anymore. His wife worked for the county library. He was so lucky that his wife had a job with good health insurance or they would have been in very desperate situation.
Today, treatments are so much more effective than they were back then. My heart goes out to everyone dealing with this disease.

By: mary

mary — Sat, 10 Oct 2009 10:07:56 +0000

I had a friend who died of CF. Both parents were carriers and knew it. They were told they had a one in four chance of having a child with CF. They had three healthy children and chose to have a fourth. She was born with it and died at 20. Stupid, inconsiderate humans.

By: Wil

Wil — Sat, 10 Oct 2009 09:47:32 +0000

What the article did not mention is that CF is only passed to a child if both parents carry the genetic markers. That is what makes it rare, because if one parent has the marker and other doesn’t, it is not inherited by the child. Unfortunately, it is likely that all children born to couples with this genetic marker will have CF.

A sad point is that this genetic marker is not readily identifiable, and, as far as I know, there is no test for it. The only way parents have known they have it is when their child is diagnosed with CF.

I don’t believe any research has been done on parents in which only one has the genetic marker. This could be done only in couples who, perhaps after having a CF child, have ended their marriage (not because of the child, of course), and gone on to other marriages with other children. Will the children of those couples pass on the gentic marker?

My nephew just died from complications of Cystic Fibrosis. He was forty-nine, and he and his wife had decided not to have children because, thus far, there is also no research to determine if a person with CF can pass it on to his or her children.

I hope that the research will cover both these areas, also.

By: Ruth Walker

Ruth Walker — Sat, 10 Oct 2009 09:11:09 +0000

Thank you for your article and helping to make people more aware of this disease. I have 3 grandkids with CF all in the same family. My son and daughter in law had no idea that they were carriers. They are the most beautiful and precious children and I am so thankful to have them. I am praying for the day that a cure is found. Knowing that they have CF makes you savor every moment with them but it is sad that we don’t do that with all children since none of us are ever promised another day.