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We know that you have Delta F508 but evidently you have never been tested. I got the Dalta F508 from my Mother and the V562I from my Father. In retrospect, it is clear that my Father had CF, therefore he had an additional milder mutation.
You should have a discussion with your DD's CF...
Stacey:
The world is full of Doctors who can't spell CF, much less dx it. I was dx at age 47. Your Doctor could have made a call to any CF Center before spewing such foolishness. Get a new Ped ASAP.
Bill
I suspect that the child in question passed before OBAMACARE or was in a state where the Governor would not sign onto the exchange. Pre-existing conditions is no longer a reason to decline health insurance in this country.
Bill
Stacey:
I'm 75 and I have CF. There are people older than I, with CF. As you know CF if a genetic disease. If your son tests positive it will be because he has had this disease for 18 years. Nothing will change with a Dx except he will be getting the necessary treatment.
I understand...
Trust me when I tell you, there is a major difference between coughing as a result of allergies, post nasal drip or just clearing your throat and bring up mucus from deep in your lungs. When you cough until you think that a lung will pop out, you would never again question the difference.
Bill
Pancreatitis is such an issue with CF, every patient at Boston Children's Hospital, who has pancreatitis, is tested for CF. Unless there is a known reason for your Mother's pancreatitis, she should be tested also.
I am sending you a private message. Look at the top of this page for...
Because I think that your digestive problems are CF related, I would suggest that the CF Specialist is the Doctor you should see first. Talk to him/her about digestive enzymes.
Bill
A very large part of my initial CF diagnosis was based upon my digestive issues and that is why I am so concerned. I was also one of the most mis-diagnosed people on this planet.
I am listing two ADULT CF Centers below.
Nashville
Vanderbilt University Medical Center
Bonnie S. Solvis, MD...
Tell me which large city you live near and I will get info on the nearest APPROVED CYSTIC FIBROSIS Center and I will get the name of the Director there.
Bill
Krystin:
In my case, my cough is triggered by loose mucus or by an irritation caused by pollen. I cough more in the early morning and much less as the day goes on. Daily treatments of saline may loosen your mucus. It loosens mine. Seeing your "local Doctor" will be fine but you should be...
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