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Tell DS that I said HELLO

I go to the Brigham and Woman's Hospital in Boston. CF patients get a private room with refrigerator, microwave oven and TV. PT brings the treadmill daily. I bring my laptop so I can connect to the internet, play movies and games. I can't see how the medical staff could be any better, they...

Google, Steven D. Freedman, MD, PhD, he is at the Beth Israel Deaconess Medical Center in Boston. I would ask your GI Doctor to call him. (617) 667-5576. He is one of the very few GI/CF Doctors in the world. A simple telephone consult could change your child's life. 5T with a high number...

I will answer based upon personal experience. I am 100% PI. If I skip, or take too few enzymes i will have diarrhea, not constipation. If he were not digesting his food properly, there would be an excess of fat in his stools (look for stools that float). The only time that I discuss CF with...

There are almost 2000 known mutations. Any 2 mutations will cause CF. if you multiply 2000 X 2000 you get 4,000,000 combinations of mutations. Add to this the fact that identical twins with the same mutations CAN be affected by CF differently, from each other. Only CF SPECIALISTS at a...

evarestos: Having had symptoms (knowingly) since age 3, it took Doctors 47 years to dx me with CF. In 1960 there were 250 known mutations, today there almost 2000 known mutations.

I go to the Brigham & Woman's Hospital in Boston. I have a private room, refrigerator, microwave, special menu, cafeteria tickets. I bring my laptop and any snacks that I want to have. I have been told that CF patients bring almost anything, including arts and crafts materials.

Treating her symptoms would not be a bad idea however only a CF SPECIALIST has the knowledge of the drugs available to treat her symptoms (CF).

81 is not borderline. GENERALLY speaking, anything equal of over 60 would require additional testing. I know that it is difficult but you need to wait for the genealogy to be completed.

To answer an earlier question that you asked about cf coughing, there are almost 2000 known cf mutations, any 2 will cause cf. 2000 X 2000= 4,000,000 possible combinations of CF causing mutations ie that many differing CYSTIC FIBROSIS strains. So there is no answer to your question.

Snow: I was 47 when I was diagnosed with CF. Relax, you are doing a great job. Bill

I would suggest that you have the CF Clinic at your "old CF Center" directly contact the CF Center at New Orleans. I know, first hand, that the small community of CF Doctors have extensive contact with each other at CFF Conferences, for example. You might call the CF Doctor at your "old CF...

If his Endocrinologist were qualified to do CF testing he/she would have already done the tests. If his Pulmonologist is an CF SPECIALIST and at an ACCREDITED CF CLINIC, see her as soon as possible. There is more than enough information to do serious CF testing. Bill

One last time, your DD must be seen at an APPROVED CYSTIC FIBROSIS by a CYSTIC FIBROSIS SPECIALIST. Anything less is simply fighting with windmills and preventing your DD from getting a proper diagnoses.. Even the "sweat test" that she was given is only a "screening sweat test", she needs the...

Google Steven D. Freedman, MD, PhD. He is in Boston at the Beth Israel Deaconess Medical Center. I was dx at age 47. I have lived much of your story.

lauryn: I know that this sounds strange but her cough is her friend. It is a way for her to clear her lungs. Let her cough, not to the point of vomiting but a strong cough is good. Bill

It sounds like you are doing everything properly for your DD. Given everything that is going on in the CF World, she will live a long and happy life. Bill

I am a 75 year old male with CF. I played college varsity basketball (not well but I played), I was a Lifeguard on an Atlantic Ocean Beach (owned and controlled by the Commonwealth of Massachusetts)for 5 years. I have college degrees. I have been married for 53 years. At the CF Clinic that I...

Simba15: Perfectly stated. We both have dealt with this type of Doctor and truly the world is full of them. Bill

Janae: If one never looks for zebras, even if they are present, they will never be found. Get another Doctor, you don't need to put up with that attitude. I went 47 years before I found a Doctor willing to look for a Zebra (CF). Bill