Topics

Negative CFTR gene
Dear, If I have a negative CFTR gene sequencing and a negative sweat test, am I negative for Cystic Fibrosis? Although the symptoms (constipation, polyps in the nose, transparent and thick mucus in the nose?) My daughters have also symptoms (one with dwarfism and constipation, the second with a negative sweat test, rectal prolapse and constipation). Thank you,
26.10.2015
DIOS in a toddler
Hello, the bowel of my one-year-old son has been purged 2 months ago. DIOS (distal intestinal obstruction syndrome) has been suspected. The physicians said that it would not occur at that age and that is was very unusual. He has had projectile voimting of his meals for several weeks and in the end refused to eat at all. After purging all the symptoms disappeared and he felt well. We were told to give macrogol in the mornings and the afternoon. Then he had again a phase of about 3 weeks in which he did not gain weight and his stools were more frequent and also not shaped. (We told it to the doctors of our CF center, but they rejected it to be irrelevant as he did not vomit). For some time he does not like to eat and for 5 days he is vomiting from time to time. Is it really so unusual or a very unusual course? Which possiblity do I still have to treat him? Thank you for your efforts, M.
26.10.2015
Diagnosis F508del and R1162X
Hello, my 11-months old son has been diagnosed to suffer from CF and F508del and R1162X have been detected. However, during the talk it became unfortunately not clear to me what kind of form it deals with here. Is that a rare combination? Can you make a recommendation for a CF center in North Rine-Westphalia [Germany]?
26.10.2015
Flower pots
Dear expert team, the teacher of my daughter put up flower pots in the classroom. Shall I ask her to put those away, due to a risk of infection with e.g. mould fungi or Pseudomonas aerugionsa?
26.10.2015
Infertility treatment, antibioitics
Hello, My husband (CF) and me, we are just before starting our infertiliy treatment. His gaining of sperms (TESE = testicular extraction of sperms) had to be postponed due to a flue. We are waiting till the infection is over, in order to have the operation done. However it is difficult to find a timepoint for him, when he is doing well, he is not taking antibiotics and the last intake has been some time ago. He takes about once a moth an oral antibiotic and every 3 months he is doing an i.v. with diverse antibiotics. In general he is doing fine, however the times without antibiotics are very rare. Is that a problem for the genetic material? To have a child is only possible for us by ICSI (intracytoplasmatic sperm injection) and in order to have a stable condition of my husband, an oral or an i.v. antibiotic therapy would assuminlgy always precede his TESE operation.
26.10.2015
Reconstituted medicine
Hello, I am a 34-year-old CF patient. I have a question about reconstituted medicine (powder medicine that is necessary to be diluted with water). For every day life, we have some hygiene recommendations on the use of bottled water that must not be kept open more than 24 hours, to prevent the development of germs. So when we reconstitute a drug we use bottled water. In general, it's indicated on the medications manual that after reconstitution the vial may be stored for several days (depending on the drug). Must we reconstitute a medication bottle every day (which means to have a "bigger" prescription) or must we use the same medicine bottle for several days (active ingredients that stabilize it to prevent the development of germs when diluted)? My request may seem stupid, but it's important for me and if someone can answer, it would allow me to "better live" these treatments, Thanks for your attention,
20.10.2015
Rain water
In our new building we have to reuse rainwater. As a preventive measure, is it not better to flush your toilet with tap water instead of rainwater? Does this increase the risk of contamination?
20.10.2015
Riding/horses hygiene
Hello, my daughter wants to take riding lessons. My question is, if she is allowed to ride also in the riding hall or it this rather risky? And what about going into the stable to the horses? Is this a risk, too? Would a face mask be helpful? Best regards,
20.10.2015
Omega 3
Hello, do you think that omega 3 could play a role on lung inflammation in cystic fibrosis?
12.10.2015
Gene editing
Hello, The last magazine edited by the French CF patient organization indicates that genetic editing techniques, for correcting the genetic material in a relatively simple and inexpensive way, have been developed. They allow to avoid vectors and correct cells directly. Could we have more information? Is it the work done by a team of researchers from Yale? Is it to correct the gene or a mutation in particular? Thank you very much for your answer.
12.10.2015
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