Topics

Turtles (tortoise) and cystic fibrosis
Hello, My granddaughter is in contact at her nanny, with tortoises (land turtles). Do they carry viruses? They are frequently subject to runny nose syndrome." Is this a risk for someone with CF? Thank you for your response.
02.01.2012
Holiday camp
Hello, Our 13-year-old son would like to spend his next summer holiday in a camp, or at least have a bit of an “adventure.” He is chronically colonized with PSA (encapsulated as well) and has to inhale Pulmozyme® and colistin on a daily basis. FEV = ca 95% and quite resilient. We cannot get accustomed to the idea of hygiene conditions in a camp (sanitation and cooling for the Pulmo…). We would prefer accommodation in a youth hostel as an alternative, or a language holiday abroad where he would stay with a host family. However, our son is not very thrilled about these options. Could you give us some ideas for a vacation and/or addresses of facilities (excluding medical rehabs) for an adolescent that would consider his “germ situation” as well as his drive for independence? Many thanks in advance.
23.12.2011
Vitamin D
Which value of vitamin D is recommended for CF individuals?
23.12.2011
MRSA
Can I get an injection into the joint if I had MRSA in the nose until recently but am clean now?
23.12.2011
uncertain cystic fibrosis diagnosis
I have a daughter of 11 years old, diagnosed with cystic fibrosis, 3 years ago(the first sweat test was 68 and the second one 62). Tests were performed ​​after the third episode of pancreatitis (she does not have respiratory symptoms). The genetic test revealed heterozygous genotype for IVS8-5T allele (intron 8 poly-T-TG: 5t_11TG/7T-11TG) with specification from Germany that this polymorphism usually is not associated with clinical manifestation of cystic fibrosis. In 2011 she had another pancreatitis. The sweat test performed after that revealed a value of 42 mmol / l ; after this test, the diagnosis of cystic fibrosis was excluded. She had a colangio-RM and was diagnosed with pancreas divisum. What do you think about the first diagnosis- cystic fibrosis- (genetic test was done for only 37 mutations)? Could she be only carrier of the disease and pancreatitis to be attributed to pancreas divisum ? She does not take anymore Pulmozyme.
23.12.2011
mutation R533X and R933G
Hello, I have heterozygous mutations R533X and R933G on each chromosome. To which class of mutations do they belong and what organ diseases do they cause? Thank you.
23.12.2011
Pseudomonas
Hello, my daughter is three years old and has CF. I would like to know whether she can play in the yard. She likes to go out into our yard and plays with dry soil.
13.12.2011
Lung rupture
I have a question: if one has a lung rupture (pneumothorax), is this treated with surgery? And if the surgery has been performed, is it possible that one is getting a tube? Is it normal to be released from the hospital the day after surgery? And if one then has problems breathing, is it true that this is from the hole caused by the tube?
13.12.2011
infection
Hello, Does a CF person who would never have pulmonary infections preserve his/her lungs or do the lungs will be however involved ? Thanks.
13.12.2011
refusal of care
My son, soon 21, takes very irregularly his treatments. I have to remind him every day and this is a source of conflict. He can be very aggressive. Apparently he does not assumes his care, does not go to the pharmacy does not prepare his medication. He refuses to talk to a professional. What to do in this case? Am I the only one to experience these problems? thank you in advance
13.12.2011
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