Topics

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
How dangerous is hairspray?
Hello, due to current happenings I am a bit worried, concerning the accidental inhalation of hairspray. Can this be especially dangerous for a CF patient, to inhale these poision- (and glu-) substances once/more often?
27.02.2016
Dental implants or dental bridges
Dear expert team, I am a CF patient, 50 years old, with normal lung function (FEV1 about 80%), with Pseudomonas and normal weight and have a diabetes for 15 years. Should I rather decide for an dental implant or dental bridge regarding diabetes and CF? Many thanks for your help and a happy new year, F.
09.02.2016
Pseudomonas at the beach
Hello, Are there any studies about the contamination of beaches of different European coast regions with Pseudomonas? Is, for example, the beach at the North Sea less contaminated with Pseudomonas than a Mediterranean or an Atlantic beach? We ask this, because we want to have the lowest possible risk when planning future holidays at the beach with a CF child... Many thanks for your help!
09.02.2016
Fracture of the humerus with osteoporosis (lung transplanted)
[11.01.16 - addendum: on request we got the information: "Dear expert team, I am 51 years old and suffer from CF. Many tanks for the answer to my question. Regards, R. ] Dear expert team, 12 weeks ago, I got an subcapital fracture of the humerus. Now the radiologist stated, that I have a reduced calcium content of the bones. I take bisphosphonates for years (alendronic acid 70mg) once a week, calcium 1000mg daily, active vitamin D (Dekristol 20.00 I.E.) twice a week, magnesium (150mg 5 capsules a day) orally. Before the fracture, I did sports regularly and moved a lot in daily life. My vitamin and mineral levels in the blood are checked regularly, dosages if necessary are apted if the values have changed. Is there any other therapy known to you, that could stimulate the growth of the bones positively (especially after lung transplantation)? It has been recommended to me to do a diagnostic ultrasound treatment. Furthermore, I got the recommendation to take golden minerals of "Self Health" (colloidal effect, therefore better uptake via the gut assumed) for 4 weeks. Also a therapy ith Symphitum in the potency D200 - globuli at first daily for 2 weeks, then for further 4 weeks once a week is planned. After homeopathic substances are used with great caution in case of transplanted patients, I am very insecure concerning the intake of the above mentioned substances. Many thanks for your help. Best regards from R.
07.02.2016
Hypertonic saline and NaCl
Hello, I came across the following article via the internet...http://m.aerzteblatt.de/news/50259.htm [article in German] What do you think about the statement concerning the assumed ineffecitveness of hypertonic saline and NaCl inhalation in case of CF children? Best regards!
07.02.2016
Medical checkup over the age of 50
Hello dear expert team, I am 51 years old and suffer from CF. I received an information about a medical checkup from the insurance for men over the age of 50. I.a. an endoscopy of the bowel was proposed to be done every 2 years. I am very insecure. In healthy people such a checkup makes sense to me, however with CF? Openly speaking the risk seems to be too high for me to get additional complications during the endoscopy via often observed possible injuries of the gut mucosa. A collegue of mine, who had such an endoscopy done, had to stay for weeks at hospital, got an MRSA and was even on intensive care unit. What is your opinion? Many greetings F.
07.02.2016
<<  < 42 | 43 | 44 | 45 | 46 | 47 | 48 | 49 | 50 | 51 | 52 | 53 | 54  ...  341 >  >>