Topics

Inflammation
Hi, I'm a CF patient. When my friend comes to stay with me she always spends the night with a very stuffy nose (inflammation without flow) and swollen eyes. This quickly gives the alarm. The rest of the time she has no symptoms (though she lives in Paris ...) Where can this come from (humidity?) And most importantly, can this affect me, too? (Although I do not feel discomfort.) Best regards.
27.02.2016
Mutations F508del & I507del
Hello, We are the proud parents of a beautiful boy with the mutations F508 and I507. We would like to have more information on both mutations together. Our son’s disease looks more digestive than respiratory, although he already had two pseudomonas colonizations (halted by an oral cure and an intravenous cure). What about Kalydeco® or another product on both mutations? Thank you in advance
27.02.2016
Questions about CF
Hello, I live in Morocco and I am the mother of a 10-year-old CF child. I would like to ask some general questions related to its illness: Regarding sputum analysis We had analyzed the same sputum sample in 2 different establishments (private laboratory and a laboratory in a university hospital); the results of the private laboratory are positive (Pseudomonas) while those in the hospital are negative twice. According to the private laboratory, analyzes are done in four Petri dishes containing 4 different culture media: fresh blood, ANC, cooked blood Sabouraud. The seeds that grow former are staphylococci, then the yeast, and finally Pseudomonas which generally can occur after the 4th day and incubation lasts until the 10th day. Regarding the public laboratory, they do not exceed 48 hours since according to them the Pseudomonas is a bacterium that grows rapidly ie within 24 hours that follow their culture and they do not require incubation for 10 days. Can you please give me your opinion on the reliability of each method? Concerning the use of antibiotics 1. In the presence of bronchitis, can the use of the single antibiotic Augmentin (amoxicillin and clavulaic acid) for 15 days can lead to a general improvement despite the presence of Pseudomonas? 2. Can the treatment with the antibiotic Ciprofloxacin orally several times (3 times) contribute to the resistance of Pseudomonas to Ceftazidime? 3. If there is a resistance to Ceftazidime, can then a course of antibiotics (Ceftazidime and Amikacin for 21 days followed by 3 months of colomycin in aerosol) be effective?
27.02.2016
Wellbeing cure for CF
Hello, I would like to know if in France there are specialized treatments for cystic fibrosis just like Thalassotherapy cures. I've heard of a center in Roscoff, Brittany. Can you tell me a little more. Thank you in advance
27.02.2016
CF Treatments
Hi, I'm a CF, I am 15 years old. I am looking for new drugs. I'd like your response. Thank you.
27.02.2016
Orkambi® prescription
Hello My son aged 30, has a F508del mutation but has not been offered ORKAMBI® yet. His FEV1 is 27% and he made all pre-transplant tests a year ago. Are all patients taken into consideration for Orkambi or are there cases where this treatment is not recommended? Has he to request it from the CF Center doctor or just wait the next appointment to propose getting Orkambi®? Thank you in advance for your response Cordially
27.02.2016
Mutations L206W and S1251N
Hello, I'm 26 years old and I have no symptoms of cystic fibrosis but these two mutations (discovered after diagnosis of CF in my two children). What do we know about these 2 mutations L206W and S1251N?
27.02.2016
Orkambi®, temporary authorization for Use
Hello, A cohort Temporary Authorisation for Use was granted for ORKAMBI® (beginning of ATU: December 2015, Europe) (http://ansm.sante.fr/Activites/Autorisations-temporaires-d-utilisation-ATU/ATU-de-cohorte-en-cours/Liste-des-ATU-de-cohorte-en-cours/LUMACAFTOR-IVACAFTOR-VERTEX-200-nbsp-mg-125-nbsp-mg-comprime-pellicule [document in French]) Who will benefit from this program? What should I do as a patient to get into this program?
27.02.2016
Mutations p.Gly542X and c.371del
Hello, Our daughter (soon 2½ years) was diagnosed to have CF following a Newborn screening test. After investigation of the CFTR gene she was diagnosed to be compound heterozygous for mutations p.Gly542X (mutation from her father) and c.371del (mutation from her mother). What do you know about these 2 mutations? Other carriers of these mutations? Our daughter seems more sensitive for digestive than for respiratory problems, but so far we can say that she is fine (Pseudomonas 1 time, Staphylococcus 1 time). Thank you in advance for your answers, Cordially
27.02.2016
Pseudomonas in plastic bottles
Dear ladies and gentlemen, am 18 years old, suffer from CF and have a question about the growing of diverse germs (Pseudomonas etc) in 1.5 l plastic bottles with diverse beverages (cola, lemonade etc., however also mineral water). My CF center recommends, not to drink the next day from a bottle that has been opened the day before, as there had been studies, who showed a colonization with germs. One should use rather glas bottles or smaller bottles. My question is now, are those studies known to you? And is there indeed the recommendation Europe-wide not to drink such beverages the next day anymore? Many thanks for your answer, D.
27.02.2016
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