Topics

Unexplained stomach pain
Dear expert team, for some month I suffer again and again from unexplained, crampy stomach pain. It deals with a kind of pain other than after a forgotten/wrongly dosed Kreon intake, it does not go along with stool irregularities. It was striking, that this pain occured frequently in phases when I did sport regularly (about 3 times a week). Often this pain occurs during the night, and I wake up from it. After the intake of a little meal or high-calorie shakes the pain is disappearing fast, however returns after some hours. In passive phases without doing sports this kind of pain did almost not occur. What could be the cause of such kind of pain? Mayn thanks in advance for your efforts. Best regards, LK
02.05.2016
Contraception in case of the intake of Orkambi® or the like
My daughter (20 yrs) takes part in a Vertex study, the drug is similar to Orkambi®. For contraception, the pill and all other hormone-based devices, are not suitable. How can she do an effective contraception without being afraid of getting pregnant? The gynecologist has no understanding for her situation and is recommending only the pill.
25.04.2016
CF Screening Test
Hello, Currently pregnant 2 months and a half, I have a niece who has cystic fibrosis (my sister’s daughter) and my spouse has a cousin, a boy of his mother's sister, who is CF. I wonder if there is a chance we be carriers?
25.04.2016
Melatonin
Hello, my 8-year-old son has cystic fibrosis and has trouble in sleeping. It takes him very long to fall asleep and he joins us in the night. He is followed up by a child psychiatrist who prescribed 2mg of melatonin for 1 month. What do you think? The CF Center pediatrician had prescribed the périactine to open his appetite but I read on your site that you advise against this drug when suffering from cystic fibrosis. Thank you for your reply. Best wishes
24.04.2016
Orkambi® Side Effects
Good evening Do you have information on the side effects of this treatment (Orkambi®) available in France since shortly but already widely distributed in CANADA or the USA? The side effects are severe and there is little feedback to take a decision. Best regards
24.04.2016
Asymptomatic patient
Hello, is it common that a CF patient has neither infections nor bronchial congestion? Our son 16 months is completely asymptomatic since birth. Furthermore, is the identification of genetic mutations 100% reliable? Thank you. Best wishes
18.04.2016
Neonatal Screening test
Hello, could you tell me if babies with at least one mutation 3849 + 10 Kb> C and another mutation have been diagnosed in Guthrie? Cordially
18.04.2016
Mild CF
Hello My daughter is 2 months old and had positive genetic testing (deltaF508 and 5T) but has a negative sweat test. She has just been diagnosed with cystic fibrosis borderline (moderate atypical). I wish I could learn more by finding people in the same situation and especially about the changes for the future ... Thank you in advance
18.04.2016
Screening test in pancreatic sufficient people
Good evening, How can mild cystic fibrosis forms be detected through the neonatal test even though those patients do not have pancreatic insufficiency? I read in an article that patients with pancreatic sufficiency are not detected in the Guthrie test but several times I read the opposite. Has the neonatal test been improved over time to detect these milder forms? Has the test changed? How many false negatives were detected on symptoms in 2015? What are the most often mutations missed by the neonatal screening? Thanks in advance
18.04.2016
Guthrie test in pancreatic sufficient people
Hello, will pancreatic sufficient babies be detected with the Guthrie test if they have cystic fibrosis? Cordially
18.04.2016
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