Topics

intravenous antibiotic treatment /home
Hi,I am from Hungary and my sister has CF. She is 19 now. She has been doing well but just this week it was considered that after the 21 days tobramicyn treatment she has too much mucus. She can not breath poperly probably due to bronchial problems / may be bronchiectasis (never before). She has ...
01.04.2014
Portocath
Is there someone who focusses on finding access to vascular system after some veins have been blocked and portocath needs to be replaced
11.03.2014
Living in Athens with CF Recommended ?
I have an 11 year old daughter with CF and we live in Abu Dhabi, UAE, but we may come to live in Athens, I am worried about the air pollution, we will be living in the hills outside Athens. Also Gala has just started to take Ivacaftor as she has the G551 mutation, is this going to be available ...
17.03.2014
29 years old CF patient
I am from Romania and I have a 29 years old son with CF, which was diagnosed late... when he was 24 (genetic mutation-milder form= G85E; R347P and test sweat = 110 ) In childhood he was diagnosed with a syndrome malabsorption . At age 12 he already hadsinusitis and nutrition problems, dry ...
03.12.2013
Pulmonary rehab for CF patients
Can you send me the latest guidelines or focused reviews on pulmonary rehab and CF Patients? Or just plain pediatric pulmonary rehabilitation.....
29.07.2013
cistic fibroses
DEAR EXPERT TEAM i would like to know more about the availabilty of Kalydeco in Bulgaria and if there will be any point for someone suffering from CF with mutation 621+1G/T,N1303K to try this medication.and also if not suitable what other treatment should we look for in order to keep quality of ...
17.07.2013
chiropractor
my granddaughter is 5 years old. Can a chiroprator help her. she is having breathing problems. she has had 3 visits in the hospital in the last 7 months with low O2 stats
09.05.2013
Burkholderia cepacia complex
Hi my sons cough swab results came back saying he has burkholderia cepacia complex. I've had to send another swab but not sure why. I have read up on this infection and from what I understand I am very worried. Can you tell me what I should expect to happen and what the likelyhood of completely ...
23.05.2013
Move to France from UK with 2 and 1/2 yr old with CF
My son has CF, with two copies of delta508. He has excellent health care in the UK and remains well, despite culturing pseudomona 3 times in his first 18 months. Now my husband has had a good job offer in the South of France and wants us all to go. What would our position be with regard to ...
07.02.2013
IVIG infusion
At age 25 I had diagnosis of Allergic bronchopulmonary aspergillosis At 59 my current age I had a diagnosis of CF by a CF doctor. I have a Delta F508 gene and the 5T variant. I also have a Primary Immune deficiency diagnosed by an immunologist. I had no titers to the pneumonia vaccine. In ...
22.02.2013