Just found out I have Cystic Fibrosis

Posted by sarahlynn1960 @sarahlynn1960, 6 days ago

I just got the results back from my cf genetic test, and my dr called and said I have it. I don’t yet understand all the ins and outs of my genetics tests yet, I’m just so sick with worry about my 2 so sons and 4 grandkids. I did just post on the Mayo CF group. It will take time for me to learn about all of this new info🙄😢

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

cayenne | @cayenne | 5 days ago

Yes, that diagnosis can be a shock. After almost 20 years with brochiectasis my doctor tested me last year and turns out I’m a cf carrier. I did let my children and siblings know. It’s helpful to know the variant(s). It may open up additional treatment options for brochiectasis. Good luck going forward

scoop | @scoop | 5 days ago

So shocking indeed. As Cayenne said, there are numerous variants, with new ones still being identified. As difficult as this news may be, having this information can be valuable, especially for your children and grandchildren, since they can be tested and receive genetic counseling if appropriate. There has been so much progress in the CF world, and it sounds like you have a caring, knowledgeable doctor helping you navigate all of this.

sarahlynn1960 | @sarahlynn1960 | 5 days ago

I’m very blessed with good doctors! I live 20 mins from UNC Chapel Hill, and they have a great CF team. My Bronciectasis Dr. is a CF specialist as well. Then of course National Jewish Hospital also rocks! My Dr said I “have Cystic Fibrosis” specifically, as well as being a carrier. So I have a lot of learning to do.

Pug, Volunteer Mentor | @ckscoville | 4 days ago

As you may have already discovered, there are two support groups here where you may find help — the Mac & Bronchiectasis group, and the Cystic Fibrosis group.