Topics

Aquagenic Wrinkling of Palms
My daughter (5 y.o.; F508del/CFTR dele2,3) seems to have Aquagenic wrinkling of Palms. What does this condition mean? IS it somehow dangerous? Should it be treated?
24.03.2014
Oxygen supply of the lung
My 7-year-old daughter is under medical treatment in Spain since her 3rd month of life. She is suffering from CF and has now a lung volume of 35%. A transplantation is urgently necessary. For 10 month we have liquid oxygen for breathing via nasal tube at home. The physicians have NEVER offered this ...
24.02.2014
FEV1
Hello, I am a 46-year-old CF woman and my FEV1 has decreased after a pneumonia, that has been treated for 4 weeks with an i.v. cure because of Pseudomonas, about half of the value from 52% to 28% and I still need oxygen, two months after discharge from the hospital, in spite of the fact the ...
17.02.2014
Does the place of residence influence the course of the CF?
Dear expert team, I ask myself, if the place of residence influences the course of the CF? That means concretely, if CF patients should prefer a residence next to the sea and if those who live in the up-country have a disadvantage due to the air there? Are there any studies on this topic? Is the ...
17.02.2014
ENAC
Hello, My question is complex. At the age of 22 months, my daughter has been diagnosed with CF because of gut and respiratory problems. The neonatal screening test at birth was negative (premature 33 gestaional weeks; 1.8kg) but, at diagnostic, the sweat test was highly positive (>200). Then, ...
10.02.2014
Atypical from of CF
Hello, I am 35 years old and in the frame of an genetic investigation it came out that I am a carrier of CF. When I was a baby, I had a strong pneumonia. I suffer from allergic asthma and have slight clubbing of the fingers. A recently performed sweat test had a result of 42 (control area). In ...
11.02.2014
Transmission
Is it contagious?
03.02.2014
Cystic fibrosis and general anesthesia
Hello, My 6-year-old son has to undergo a very minor dental operation. It was initially planned under general anesthesia. But the day of the intervention, one of the anaesthetists opposed the general anesthesia by precaution due to cystic fibrosis. I specify that the CF Center had validated the ...
03.02.2014
Extreme hand wrinkling
Hello, I currently am experiencing extreme hand wrinkling within minutes in a bath tub or shower my hands are extremely wrinkled and burning or tingling. I do not have Cystic Fibrosis or diabetes...I do have JRA.. Does it have to relate to a disease?
27.01.2014
Low weight gain
My son is 9 months old with low weight gain. When he was born we decided not to do the neonatal testing. For 15 days now, his feces are like mud and have a strong smell. He has 4-5 movements daily. We, the parents, were not tested prior to the pregnancy. Should we worry? Do we need to get tested?
27.01.2014
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