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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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- asthma
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Topics
- Mutation
- On our genetic result sheet the mutation "r334W/F508 del as well as p.Arg334 Tsp" is mentioned. The mutation 508 seems to be frequent. The other mutation seemingly not. Could you give us more detailed information on the above mentioned mutation? Many thanks.
- 30.07.2012
- 9 years after lung transplantation: I wish to have a child!
- Hello, I am 35 years old and had a lung transplantation due to CF in 2003. Now me and my partner we wish to have a child. I do not have any problems since the transplantation and not a single rejection and I am doing very, very well. My medication is: tacrolimus, MMF, cortisone 5 mg, pantoprazole 40mg and a few vitamins as iron, magnesium and vitamin D. Also with the medication I do not have any problem and I tolerate everything well. Is it possible? Did this happen before? That a lung transplant recipient gave birth to a baby? And how was the outcome? I wish it soooo much… Many thanks for a soon answer.
- 30.07.2012
- VX 770 without effect
- Hello, after taking VX770 for four weeks, I (29 years old, FEV 32%) could not detect any measurable or subjective improvement (FEV unchanged and large amount of secretion as usual). Since, apart from having the G551D mutation, I am also G542X carrier, the question is whether this second mutation could possibly "prevail" and thus explain the lack of effectiveness of VX770. If not, do you happen to have any idea what could be the reason for this "standstill"? Many thanks for your answer.
- 30.07.2012
- Ascites puncture (paracentesis)
- Dear expert team, From what point onwards can ascites puncture (paracentesis) out of therapeutic indication (rapid relief of dyspnea or abdominal pain as a result of large amounts of ascites) make sense? Is it likely that ascites will reoccur in the stomach soon? Kind regards.
- 30.07.2012
- Preimplantation check
- A friend of mine is a carrier of the F1052V mutation and her husband is a carrier of the 621+3A>G mutation. Do they have to do a preimplantation check? They will proceed with an IVF due to azoospermia.
- 30.07.2012
- Lab Equipment
- HI I have a son with CF. We are trying to improve facilites etc in the regional CF Centre. I have come across some info on a piece of lab equipment for detecting bacteria in sputum and blood samples. It seems the results are available within 24hrs. Have you come across the "MALDI TOFF"? Pseudomonas results etc can be picked up within 24hours, this information I feel for a CF patient would be of great benefit. Would you have any idea as to the cost of such a piece of equipment. Thanks
- 23.07.2012
- Duchenne muscular dystrophy and PTC124
- M sun age 10 has Duchenne muscular dystrophy. Please how can I get the ptc 124 drug?
- 23.07.2012
- Sweat Test Result
- I have read data regarding the sweat test for CF and at an approved centre I believe a result over 60 confirms the diagnosis of CF. Can you tell me please if the higher the figure has any relation to the effect of the disease? For example if the sweat test results with a child over 8 months was in the 80's and another child's result was 100+ does this mean anything specific other than there has been a definite diagnosis? Thank you for reading and hopefully answering this.
- 23.07.2012
- Hyperechogenic bowel
- I am 29 years old and pregnant with my 3rd child. Due to a known thrombophilia issue I started an injection therapy. After a check I had the following results: CMV IgG 236 positive CMV IgM 0.87 borderline CMV IgG Avidity 0.83 indication of prior infection In week 13-14 I had a hemorrhage and my doctor proceeded to bind my uterus. At week 22, after an ultrasound check, it was discovered that the embryo had a hyperechogenic bowel, a finding attributed to the prior hemorrhage. My doctor recommended an amniocentesis based on these findings regarding the CMV, but said it was my devision, but I am very hesitant about this option due to prior miscarriages. What are the chances of my baby having CF? Should I do the amniocentesis? Thank you!
- 23.07.2012
- results regarding Ataluren project
- Hello, I am the father of a one year old CF girl with a stop codon mutation and I received by mail the first results of phase 3 Ataluren (PTC124). All information that I received are in english, can you enlighten me on these results?
- 23.07.2012
