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8 yo with pancreatic insufficiency, fighting for genetic sequencing Julie: I go to Childrens in Boston, they are great there. which GI Doctor are you seeing? Bill

8 yo with pancreatic insufficiency, fighting for genetic sequencing Julie: I understand that the hospital is an approved CF Center. Is the Doctor a CF Specialist? He is saying things that don't make any sence to me but I'm only a CF Patient. Bill

Hang in Colleen Bill

Hang in Colleen Bill

I was dx at age 47 and I'm 72 now. Bill

I was dx at age 47 and I'm 72 now. Bill

I recently lost 3 inches in my gut. Mucus was, and still is, interacting with the stool and "gluing it to the walls of the colen. Two weeks of Mirilax in orange juice did the trick. Now a couple of times a week for maintainance. There is also something, common with CF, called bacterial...

I recently lost 3 inches in my gut. Mucus was, and still is, interacting with the stool and "gluing it to the walls of the colen. Two weeks of Mirilax in orange juice did the trick. Now a couple of times a week for maintainance. There is also something, common with CF, called bacterial...

TestifyToLove: It is possible to be seen at a hospital that is affiliated with or even has a CF Center in house without being a patient of the CF Center. I stand by what I said. If the child is seeing a CF Specialist, then fine. If not, he should be. I do appreciate your reply. FYI, I went 47...

TestifyToLove: It is possible to be seen at a hospital that is affiliated with or even has a CF Center in house without being a patient of the CF Center. I stand by what I said. If the child is seeing a CF Specialist, then fine. If not, he should be. I do appreciate your reply. FYI, I went 47...

riehlism: At the top right of this page you will find "FIND A CF CENTER". Click on that then click on Cali on the map Bill

riehlism: At the top right of this page you will find "FIND A CF CENTER". Click on that then click on Cali on the map Bill

Make sure that your child is in, or being seen at, an APPROVED CF CENTER by an CF SPECIALIST. Once that is done, get out of the way and let the CF TEAM do their job. Your childs quality and length of life is in the balance. Bill

Make sure that your child is in, or being seen at, an APPROVED CF CENTER by an CF SPECIALIST. Once that is done, get out of the way and let the CF TEAM do their job. Your childs quality and length of life is in the balance. Bill

Sweat tests for you and hubby have no bearing unless one or both of you have CF. Screening for most common mutations is a test for 250 mutations. There are more than 1800 known mutations. LCLA is not an APPROVED CF CENTER and the Doctors that you are seeing are NOT CF Specialists. You need...

Sweat tests for you and hubby have no bearing unless one or both of you have CF. Screening for most common mutations is a test for 250 mutations. There are more than 1800 known mutations. LCLA is not an APPROVED CF CENTER and the Doctors that you are seeing are NOT CF Specialists. You need...

This could be an ADA issue. Talk to Human Relations. Bill

This could be an ADA issue. Talk to Human Relations. Bill

There are several levels of testing done for the CF gene. When I was first tested there were only 250 KNOWN mutations, today there are more than 1800 KNOWN genes. Unfortunally, usually because of cost or insurance limitations, people are still tested for much less than the FULL CF SEQUENCING...

There are several levels of testing done for the CF gene. When I was first tested there were only 250 KNOWN mutations, today there are more than 1800 KNOWN genes. Unfortunally, usually because of cost or insurance limitations, people are still tested for much less than the FULL CF SEQUENCING...