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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
- antibiotic therapy
- asthma
- complementary medicine
- covid-19
- diabetes
- diagnostics
- drugs side effects
- drugs under development_genetic therapy
- ENT
- general aspects
- genetics
- health care
- hepatobiliary disease
- hygiene
- i.v.-lines
- inhalation
- lung
- microbiology
- miscellaneous
- modulator therapy
- MRSA
- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
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Topics
- swimming
- We will soon visit friends who have a new pool treated not with chlorine but with salt. They certify that their water is very clean but I do not know if my daughters (both have CF) can bath safely. The hospital that follows them has no clear answer to me, and it seems that there are no studies on this subject; In advance thank you.
- 20.06.2011
- caring for a russian patient
- Hello, Could you please tell us what steps to be done to bring a Russian patient for analysis and treatment in a French clinic/hospital. An association in St. Petersburg fully supports moving and medical expenses. Thank you very much in advance, Sincerely,
- 20.06.2011
- Compound heterozygous mutation delF508/R347H
- Hello My daughter is currently pancreatic sufficient since birth. I guess that when the patient is compound heterozygous (mutations deltaF508 and R347H) the mildest mutation gets over the other one Will it remain so, or do studies / statistics and knowledge on the R347H mutation phenotype show that over time the pancreas may no longer assume its exocrine function? (I do not mean risk of diabetes). Thank you in advance for your reply Cordially
- 20.06.2011
- Sustainability of pancreatic sufficiency in case of compound heterozygous mutation F508del/R347P
- Hello My daughter is currently pancreatic sufficient since birth. I guess that when the patient is compound heterozygous (mutations deltaF508 and R347P) the mildest mutation gets over the other one Will it remain so, or do studies / statistics and knowledge on the R347P mutation phenotype show that over time the pancreas may no longer assume its exocrine function? (I do not mean risk of diabetes). Thank you in advance for your reply Cordially
- 20.06.2011
- Familial difficulties
- Hello. My 7 month old daughter is affected by cystic fibrosis. She was operated on day 1 for an atresia and hospitalized several times, including because of "mucus jam". How could we react when the family is heartless or, worse totally fled, or strikes us as "you radicalize your words that are extremely violent (note that I just have remember them that we have to wash hands regularly, and especially after going to the toilet - thing that some don’t do -. I don’t understand what could be shocking because for me, it is a fundamental rule of hygiene. Furthermore, I said it calmly). Apart from this episode, we have to face with the desertification of our family, or with his misunderstanding. In this way, by example, for the mucus jam : "but all children could be constipated". Despite all the explanations of the world, nothing to do. I am aware that everyone reacts in their own way face to the disease: "escape, denial of illness etc" but could you tell me what would be a good attitude to adopt? Perhaps ignorance, but ignorance is a very cruel feeling.... Thank you in advance for your reply.
- 20.06.2011
- Crataegus
- Dear CF-team, quite a time ago, the influence of Crataegus on CF had been investigated. However, I cannot find a final conclusive judgment/results in the internet. Can you give me (F508del-mutation heterozygous) some information about this? Best regards and thank you,
- 20.06.2011
- Frolow breathing-exercise device from www.atmosana.eu
- Is there a benefit known from the breathing-exercise device frolow from atmosana in case of CF?
- 20.06.2011
- High-calory additional food
- Is it correct from the medical and nutritional standpoint that CF patients replace the usual meals with wholefood by the "intake" of high calory additional food?
- 20.06.2011
- Connection between joint pain and menstruation?
- Dear expert team, for half a year I suffer increasingly from spasmodic joint pain. I first assumed a time-connection to the intake of certain drugs, now however, I stated that those batches are especially severe at the first days of my menstruation. As I have read in the meantime, the age-related osteoporosis of women is seemingly in connection with the menstruation resp. menopause. I am however still far from that. Has the osteoporosis, that occurs as a consequence of CF, something to do with that or is the occurence of joint pain and menstruation at the same time in me rather an accidental conincidence? Would this be relevant to treat in any respect? Many thanks for your answer in advance. Yours sincerely,
- 20.06.2011
- Mould fungi during renovation of the school
- Dear expert team, our daughter with CF visits the 7th class of a secondary school, that will be renovated from June 2011 on. The school is about 30 years old, the building should be kept, but indoors all rooms should be renovated one after the other. The lessons go on, the building site should be devided from the other rooms with wood panels. We are now concerned, that due to the removal of the old carpets and other materials mould fungi could be in the air, especially ABPA. Is there a method to screen the air for such fungi? Many thanks
- 20.06.2011
