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Keely: I recently had to change CF Clinics because I strongly felt that the CF Doctor I was seeing was not listening to me. Now I'm 72 and much older than that Doctor, and I have two college degrees, so I can only wonder as to how little your Doctor is listening to you. Go to see the adult Cf...

By definition a CARRIER has one known mutation a CF PATIENT has 2 known mutations. When I was first tested in 1995 they found one mutation but at that time they could only scan for 250 mutations. In 2011 I had a second screening, this time for more than 1600 mutations. In this FULL CF...

By definition a CARRIER has one known mutation a CF PATIENT has 2 known mutations. When I was first tested in 1995 they found one mutation but at that time they could only scan for 250 mutations. In 2011 I had a second screening, this time for more than 1600 mutations. In this FULL CF...

Are you sure that you got a FULL CF SEQUENCING?

Are you sure that you got a FULL CF SEQUENCING?

Barb: Go to Forum/Newly Diagnosed. Ambry Genetics may be able to help you in identifying your mutations. Bill

Barb: Go to Forum/Newly Diagnosed. Ambry Genetics may be able to help you in identifying your mutations. Bill

I was dx at age 47. I have two mutations. I missed the entire 2nd quarter of hs with lung issues, I was x rayed on a monthly basis for TB for 18 months. At age 20 I started stomach bleeding and part of my stomach was removed at age 26. Over the next 10 years I was hospitalized about 70 times...

I was dx at age 47. I have two mutations. I missed the entire 2nd quarter of hs with lung issues, I was x rayed on a monthly basis for TB for 18 months. At age 20 I started stomach bleeding and part of my stomach was removed at age 26. Over the next 10 years I was hospitalized about 70 times...

Rachel Are you being seen at an APPROVED CF CENTER? If not, change to one ASAP. Bill

Rachel Are you being seen at an APPROVED CF CENTER? If not, change to one ASAP. Bill

Late Diagnosis of atypical or Ringer: My fev1 is in the upper 70s but I'm completly PI. You need to get to a APPROVED CF CENTER ASAP. Trust me, non CF Doctors don't have a clue about CF. Bill

Late Diagnosis of atypical or Ringer: My fev1 is in the upper 70s but I'm completly PI. You need to get to a APPROVED CF CENTER ASAP. Trust me, non CF Doctors don't have a clue about CF. Bill

Moms of CF kids: There is a very serious message on this thread. Lets say I'm a non CF kid in the 3rd grade. At snack time I'm limited to the schools strict list of approved snacks but there is a CF kid who is allowed to eat POTATO CHIPS. I like potato chips. I want potato chips at snack...

Moms of CF kids: There is a very serious message on this thread. Lets say I'm a non CF kid in the 3rd grade. At snack time I'm limited to the schools strict list of approved snacks but there is a CF kid who is allowed to eat POTATO CHIPS. I like potato chips. I want potato chips at snack...

I'm 72 dx at 47

I'm 72 dx at 47

Tom has obviously never seen anyone with fat legs. After five years as a lifeguard on an Atlantic Ocean beach and not wanting to argue with the good Doctor, I can tell you that lots of people "store" fat in there legs. Bill

Tom has obviously never seen anyone with fat legs. After five years as a lifeguard on an Atlantic Ocean beach and not wanting to argue with the good Doctor, I can tell you that lots of people "store" fat in there legs. Bill

Before I was dx with CF and I was in the years that I suffered from pancretitis, I was rushed to the ER. The doctor came in and asked what my problem was. I told him i had "sub acute recuring pancretitis". To which he replyed....HAVE YOU EVER HAD IT BEFORE?