ecorn-cf: App. question list

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VX 809 -gene therapy: My son is 6 years old and he has a cystic fibrosis - genotype Delta F 508 in both allels. When we can to expect the gene therapy of product VX 809 in Europe as part of necessary medical therapy?; 07.04.2009

Carriers CF: I have CF and my daughters are carriers. Now I have read that in America injections are being given to carriers so that they can’t become sick and they can’t give the disease to other people. Now this seems a major breakthrough and would certainly prevent lots of CF. It seems however unlikely. How is that?; 07.04.2009

General pratitioner tests: I am a general practitioner treating a CF patient who is in his early thirties. Which tests/exams should I do or arrange for, and in what intervals?; 06.04.2009

Spasm of the breathing muscles as a reason for dyspnea?: Hello, I am a general practitioner and I am treating a 20 year-old CF patient, who have been clinically quite inconspicious up to now. Additionally he is under that care of a CF center and is regularly provided with antibiotics in case of exacerbations, under monitoring of the CRP, there. Today he came into my office, with a severe dys- and tachypnea and mentioned as a reason that "the breathing muscles and the muscles of the thorax would cramp painfully" which would be the reason that hinders him from breathing freely. After a pulmonary infection has been excluded by the colleagues, I ask myself if this could be a hyperventilation tetany that affects the breathing muscles and worsens the dyspnea in an attack at that. Does an involvement of the muscles exist in CF? Many thanks for your thoughts.; 06.04.2009

Equipment availability for patients: Is there funding available through government / hospital or are the devices self funded. 2 If the devices are funded do the patients have to meet any set requirement/ criteria ie pensioner, health care card 3. If funded are they able to access more than one device 4. Is it only on dr or physio recommendation 5. Do any external organisation like the Cystic Fibrosis association support any patients with supply of devices 6. Do you have a system for trialing in hospital considering some of the devices are listed single use only - like the flutter and acapella; 06.04.2009

Pseudomonas aeruginosa: I have a child 10 years old, infected with Pseudomonas aeruginosa and following treatment with antibiotics in hospitals, will ever get rid of this microbe from the lungs? wait your answer; 06.04.2009

cystic fibrosis and arthritis: My daughter of 21 years old has problems with arthritis. I have read there are a number of problems with joints associated with cystic fibrosis, what is the problems?why it hapens? she takes ibuprofen and gets better, what do you thing about it? Thanks; 30.03.2009

Sputum color: Hello. What does the sputum color reveal? Thanks in advance for your answer!; 26.03.2009

lung function: i have been told my lung function is a third of predicted, does this mean my lung function is around 33%?; 26.03.2009

Transplantation of the lung: Dear expert team, probably I made my former question too short: my son has a positive finding of a chronic colonization with Pseudomonas in the paranasal sinuses. Half a year ago, the new lungs have been transplanted. My child is doing fine. However, how big is the danger of the transplanted lung getting infected with the Pseudomonas? Is the course of the illness the same as with a "normal " CF lung? Many thanks for your answer.; 24.03.2009