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Topics
- Heterozygous mutation in the CFTR gene
- Hello, In my son (4 years 11 months, developed according to age) a heterozygous misincorporation c.1408G>A (p.V470M) in exon 11 of the CFTR gene was identified. The background: Since a lobar pneumonia two years ago that was treated in the hospital, my son has been suffering from numerous infections. Until today, he has been diagnosed with a total of eight other lobar or atypical pneumonias. A sweat test carried out in the context of pulmonary diagnostics in April showed borderline values of 38mml/l and was therefore repeated. The second result, which we got just recently, was roughly the same (36mml/l). A subsequent gene test returned the result mentioned above, though it was noted that the mutation detected was not the reason for the recurring pneumonias. How would you evaluate this? Kind regards.
- 14.02.2012
- Muscle pain due to co-trimoxazole
- Dear expert team, I (CF, 24) recently got my long-term antibiotic switched from azithromycin to co-trimoxazole (960mg three times a day). Since the fourth day after the switch, I suddenly have severe muscle pain when jogging. With each movement of the foot, the pain spreads from the back of the foot to the shinbone and, after 2 km latest, becomes so unbearable that I cannot continue running. During the first minutes after stopping I can hardly move my feet up and down; after a break of a few minutes everything is back to normal again. If I resume running, it immediately starts again. It feels like the muscles were stuck together with glue and I had to tear them apart with each new step. The pain occurs only during jogging, not in everyday life. Lack of fitness cannot be the reason, since I ran long distances without problems before switching antibiotics. I have also tried stretching the respective muscles before running, but that does not help. I can only think of co-trimoxazol as an explanation, since the package insert mentions muscle pain as a very rare side effect. Could that be the cause? Is it harmful if I run nevertheless, at least the 2 km until the pain becomes too severe? Is there anything one can do about it, or is switching antibiotics again the only solution? I am reluctant to give up running due to the good training for the lungs. Many thanks in advance. S.
- 14.02.2012
- Money and CF
- Hello, I would like to know why there lacks so much money in the fight against cystic fibrosis, and how to fix it ? Thank you in advance.
- 14.02.2012
- Mycobacterium abscessus
- Dear expert team, a friend of ours has CF and has been colonized with Pseudomonas aeruginosa for quite some time. Now, a mycobacterium abscessus colonization came on top of that. My questions on this: 1. Which health effects can the mycobacterium have? 2. How high is the risk of infection for other patients? 3. What are the sources of transmission? 4. How can the mycobacterium treated most sensibly? Many thanks in advance for your answer and for this fantastic website.
- 14.02.2012
- Possible Pregnancy, CF and IVF
- We have tried IVF and we are at a very early stage. Unfortunately I did not manage to do any testing for CF. I am now gathering information about it. I would like to know (if we get positive results about the pregnancy) when and how I can find out if the embryo is a carrier and if there is any treatment.
- 14.02.2012
- diabetes and CF
- Is it possible for patiens with CF to suffer from diabetes due to CF? If yes, what should a mother do for her baby, in order to minimize this possibility? Is it a diet issue? Can it be avoided?
- 14.02.2012
- follow up the disease
- My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). How do you recommend to treat the baby so that we do not tantalize with many investigations but also keep on eye on the disease. E.g. it was recommended to me to do monthly analyse of sputus, but I see this quite an invasive investigation as long as he has no pulmonary symptoms yet and has no sputus. I currently do throat and nose exsudat for every cold he has. But is it enough? Thank you
- 24.01.2012
- VX-770
- Hi there, My daughter is currently 7 months old with G551D as one of her mutations. I just wondered if the drug is approved this year in the 6yrs and older subset can it then be used in younger children with the dosage ammended accordingly? Or would they need to carry out a clinical trial in younger children first? Thanks, J.
- 23.01.2012
- Cough
- I have a grandson 4 months old who has CF (Delta 508F and G551). To date he has shown no signs of his condition and thriving well. I have had a chest infection and completed a course of anti biotics. I feel well but do still have a cough which I feel will take awhile to clear. Obviously I have kept away from my grandson but as I feel back to normal can I now be in contact with him or must I wait until the cough has completely cleared? Thank you.
- 23.01.2012
- Classes of genes
- What are the classes of CF gene mutations? Thank you
- 23.01.2012
