Topics

Brace
Hello, should CF patients disinfect their moblie braces daily, respectively can they be put into the vaporiser? Thank you very much!
02.04.2015
Bite splint
Hello, I am suffering from CF, am chronically colonized with Pseudomonas and have now recieved a bite splint from the dentist due to nightly teeth pressing. Even if the dentist knows about my CF, he said after I have asked him, that I would not have to pay attention to a special hygiene concerning the cleaning of the splint: washing with hot water would be enough. Now I am sceptic and I want to avoid that the splint becomes an origin of germs. I cannot put it into the vaporiser, as it stands only temperatures below 70°C. Which possibilities of cleaning are there and are my concerns justified? Many thanks for your efforts,
02.04.2015
MBL (mannose-binding lectin)-associated immune deficiency in case of CF
Dear CF Ecorn team, I have recently been diagnosed to have an MBL (mannose-binding lectin) deficiency (below 30ng/dl) during a hospital stay at a clinic in town. I have been admitted via the emergency doctor to the emergency departement of the hospital because of acute dyspnea and sputum, here a pneumonia has been diagnosed via a thorax x-ray. CRP value (0,09mg/dl) and the leucocytes (9,7/nl) have been too low for a pneumonia according to the physician, therefore further laboratoray values, among those also the mentioned MBL, have been investigated. The rest, also the blood gas analysis and the immune globulins have been normal except for IgM (290mg/dl), creatinin (1,6mg/dl), hemoglobin (9,8g/dl). I have only been diagnosed to suffer from CF for one year (R117H-5T mutation), before, my lung problems have been associated to asthma and bronchiectasis. With my CF I have especially problems with my lung, I am positive for Pseudomonas and I am 24-years old. Now to my acutal questions: 1. What does the MBL deficiency immune defect mean for me; consequences? Can something change therapeutically with that? Do I have to take soemthing into account concerning my clinical daily life? ...The clinician could not really give me an answer.... 2. If I have an infection, are the CRP values/leucocyte counts not meaningful anymore due to the MBL deficiency immune defect? It is not for the first time that I had an infection and the inflammtory values have been normal. Many thanks in advance, until now nobody could give me a meaningful answer. Best regards, J.
02.04.2015
Brita water filter
Many people nowadays use a Brita water filter at home to make the water lime-free. However, is such a Brita a good idea for people with cystic fibrosis? Because we’re talking about 'stagnant' water ... Thank you for your advice!
25.03.2015
Water from the Rhone River
Hello as a mother of a little CF boy with cystic fibrosis and in anticipation of the beautiful days, I'd like to have your opinion. This summer at the grandparents of my son, the swimming-pool (so contact with body and possibly mouth), a small shower before swimming, but also a small sink in a kitchen (washing hands and dishes, cooked meals outside) are fed by water from the lower Rhone River. Is there a risk for my child? Thank you!
25.03.2015
wet clothes
Hello, I’d like to know if it is not advisable to hang out my damp clothes in my house with a CF child? (I am thinking in particular of moisture risks). Thank you for your answer.
25.03.2015
Chest strap
Hello I would like to know where to buy a chest strap for the chest physiotherapy of my young boy. Thank you.
25.03.2015
Cystic Fibrosis
What are the new therapeutic perspectives?
13.03.2015
clinical trial
Hello Is there any clinical trial regarding patients with mutation G542X/Delta F508 ? Thank you
13.03.2015
My son: a 3 months-old CF baby
Hello, My son born in September 2014 was detected to have cystic fibrosis in October 2014. Since then, our lives are turned upside down .... A lot of stress and fear for the future of our child. We got the results of mutations in December. Since I’m crying a lot... Can you give me some explanation about p.Phe508del mutation (F508del) and c.2039delC (2171delC) mutation class 1 ? Will there be a treatment with these two mutations??? Will we have one day a gene therapy? If someone has mutations Class 1 and Class 2 can you reassure me about his health? THANKS IN ADVANCE.
13.03.2015
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