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- ABPA_Aspergillus
- accompanying diseases
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Topics
- CF and healthy carrier
- What is the concept of healthy carrier?
- 24.04.2012
- Aberrant Splicing Mutations and Ataluren
- My 14 year old daughter has the two mutations DF508 and 621 + 1G > T. It is my understanding that the 621 + 1G > T mutation causes aberrant splicing of mRNA. How is that different from a nonsense mutation? Currently, I see that Ataluren trials are targeting nonsense mutations in Class I. Since 621 + 1G > T is in Class I as well, could Ataluren potentially help carriers of this mutation as well or will it work only on nonsense mutations? Thank you.
- 24.04.2012
- A Friends child
- I suspect that a friends 1 yr old might have CF, he is ill every week, has had a cough since he was tiny, sicks up mucus and she tells me his stools are/were greasy. The only thing that buts doubt in my mindf is he is a very healthy weigh. I have hinted and even mentioned CF once but each time she goes to the doctor they just give anti-biotics and this week gave him Gaviscon® for reflux. Should I say anything? Why hasnt it flagged up at the surgery?
- 24.04.2012
- Faecal elastase
- Hello, Whereas previously the fecal elastase of my 3yr old daughter was normal (greater than 200), the last test shows a significant drop of elastase with a level of 57 like a severe pancreatic insufficiency. Is this result irreversible? Could the elastase return normal? is Creon enough to correct this insufficiency?
- 24.04.2012
- Cystic fibrosis and veterinary practice/clinic (infection)
- Hello, Can it be recommended for a CF patient to work in a veterinary practice? A friend of mine is opening a practice and would like to employ me on an hourly basis to answer the phone. Unfortunately, the reception desk is located pretty central. Is the risk of being infected with MRSA very high?
- 24.04.2012
- Water tank in VW bus
- Hello, we are planning a trip with the VW bus across Norway for several weeks. For washing the dishes (we would be well dried of course), cleaning, etc. we entertain the thought of using the 40-l-watertank. We would put Micropur into the tank prior to departure to minimise the risk. Is this a risk for an accompanying CF patient? Thanks.
- 24.04.2012
- MucoClear® 6% (hypertonic saline solution) harmful for children under 6? [follow-up question]
- My 3,5-year-old daughter (CF) inhales MucoClear® 6% [NaCl 6%] and tolerates it well, she has no bronchial problems; we do inhale 2 puffs Salbutamol previously to avoid bronchial constriction. Can we continue this way without concerns? Or can this be harmful. It is dissolving very well. Thank you.
- 24.04.2012
- MucoClear® 6% [hypertonic saline] harmful for children under 6 years?
- Hello, I have a question regarding MucoClear® 6% [NaCl 6%]. Since our health insurance does not pay the 3% NaCl our outpatient clinic prescribes MucoClear® 6% for our three-year-old daughter that we mix with 0,9% NaCl. Some days ago we made an inquiry at "ACHSE" (German alliance for chronic rare disease) because we wanted to know why some patients are paid MucoClear® 6% for their children under 6 years and others not. The following answer was given: "The group of people was limited as follows: "For symptomatic inhalation treatment of cystic fibrosis for patients from age six". This prescribability is limited to 15th of August 2012. Then, a new assessment will be done. Up do date there has been no study confirming that MucoClear® 6% is not harmful to health for children under 6 years." The last sentence has irritated me a bit and I would like to ask inhowfar MucoClear® 6% is harmful to health for children under 6 years or what kind of harm it does to children. Thank you for your answer.
- 24.04.2012
- Rowing with CF - yes or no?
- Hello, Is rowing in a river - in my case it would be the Saar [German river] - risky with regard to an infection with problematic germs or not? Many thanks
- 24.04.2012
- No kreon despite cystic fibrosis
- Dear Sir or Madam, I (female, 24 years old, CF) have not taken kreon for about two years. I am 160cm tall and my weight is 53kg (stable) and I do not have abdominal pain at all and bowel movement is well. My doctor is not happy about it [that she is not taking kreon] but I do not see the difference if I take enzymes or not. Is it possible in CF that digestion works well?
- 17.04.2012
