Topics

Please help me understand CF mutations.
Hello, I previously asked this question which was not answered. I am hoping to receive some information. My husband and I are in the process of electing PGD and would like to know what clinical symptoms, if any, we can expect in offspring with the following mutations: Husband: one copy of F508 Del one copy each of D443Y;G576A;R668C 7T/9T Wife: one copy of M470V (no deletions or duplications, one benign sequence change) 7T/7T. My husband has CBAVD so we must elect IVF treatment. His sweat test was 40 and doctors are divided on a DX of CF. Thank you.
08.04.2014
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 never been treated with IV but it seems that now this is the best solution. In Hungary the doctors just as the hospitals are disasters and the Cf centers do not work properly. My question is that if we have the money can we take her somewhere abroad within the EU for the 14 days IV Treatment (mainly Austria, but also Switzerland,Slovenia,UK)? Or even have her CF doctor abroad? In this enviroment IV treatment would weekenth her immune system which would cause other infections. Thank you for your help in advance!!!!!
08.04.2014
Dornase alpha
How is dornase alpha prepared or made? I have read that it is recombinant dna but from which cells is it taken?
08.04.2014
Diagnosis during pregnancy
Hello, mother of a 18 months old girl with cystic fibrosis, I'd like to get more information about the methods of detection of CF during natural pregnancy. At what point of pregnancy are these exams performed? When are the results known? Thank you!
08.04.2014
Accomodation of grandaughter in foster family by judicial decision
Hello, I have just learned that my granddaughter will be accomodated in a children's home following a judicial decision due to abuse from her mother. I propose to take care of her for the time until finding a foster family because I'm not in the age to take care of her properly for a long time. I don’t find this decision very related to her disease; what advice would you give me to do the best for her because I intend to be present in her life in order there are not too many repercussions on her illness. Thank you for helping me.
08.04.2014
Evolution of the illness
Hello I realize a study on CF and I'm missing some information. Is the development of CF slow or rather fast?
08.04.2014
MDMA and E
Hi there, I wondered if you could please tell me about the effects of MDMA and E from a systems perspective on a person that has cystic fibrosis or if there were any links to literature/information handouts anywhere? I am a health professional that has recently been asked this by an adolescent child who has been using them and we are trying to support them to NOT be using them by providing up to date scientific information but have found it difficult to find this information anywhere. Thank you.
08.04.2014
query - carrier
Dear Sirs I sent a question to the cystic fibrosis organisation and they directed me onto you as it was medical question. I have just found out that myself and my sister are carriers of the cystic fibrosis gene only and do not actually have it. I wanted to know if it was true that if you are a carrier you can also show some slight symptoms of CF with lung problems etc? My sister has severe asthma (COPD) and i have asthma also and always cough a lot and have a lot of flem/mucus (sticky gunky) that comes up. Sorry to be graphic. I have read a lot of places and forums online where people say that you can have symptoms or slight symptoms show and some sites say no. I also read some scientific facts somewhere that there is more and more evidence showing this with patients coming forward? I would be very greatful if you would be able to help me with this matter?
08.04.2014
Manuka Honey
I have read a paper explaining that Manuka honey could not work in CF patients because it can not be inhaled and when taken orally, it would not reach the lung. I am not scientist, hence perpaps this is a silly question, but why can manuka honey not reach the lung when taken orally, but oral antibiotics can?
08.04.2014
Swimming
My son (aged 7) is due to start swimming with school in January. The pool used by the school is not chlorinated but the water is cleaned by ultra-violet light. Would this pose any infection risk for someone with CF? Thank you.
08.04.2014
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