Σύνδεση χρήστη
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Keywords
- 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
- psychosocial
- public facilities
- recreational activities
- reproduction
- research
- social law
- sport
- swine flu_novel influenza
- transplantation
- travelling
- vaccination
- ventilation
Topics
- Hope for cure
- I am a carrier of two mutations, G542X and 2183AA>G. Are there any grounds for hope for a cure in my case? If yes, what does it mean and what will change in my everyday life? If not, is there anything being done for my mutations, or are they rare and indifferent to the researchers?
- 19.09.2015
- Treatment for CF
- Is there a treatment/cure for a person with the mutations DF508 & 621+1G>T?
- 14.08.2015
- Heterozygous F508del/2789+5G>A
- Hello, I am 56 years old and CF compound heterozygous F508del / 2789 + 5G> A. I read several foreign sites that ivacaftor was prescribed to patients with the same mutations than me, with results that seem spectacular. My pancreas hardly works, but being still pre-diabetic I try to save the few ...
- 05.08.2015
- F508del Heterozygous
- Hello, I read this article very encouraging: http://www.news-medical.net/news/20150519/Two-drug-combination-improves-lung-function-in-some-cystic-fibrosis-patients.aspx But for heterozygous F508del, do not we say that if we correct a mutation, we "cure" the disease ?? So, those who have at ...
- 05.08.2015
- H199Y mutation
- Hello, my daughter born in 1995 has a H199Y mutation not listed in one of the four mutation classes (confirmed by doctor and scientist of the French CF association). How is this possible and how to know in this case if one of the latest treatments and future developments will be of ...
- 05.08.2015
- Gene therapy: GL67A
- Hello, The results published in The Lancet Respiratory Medicine by British researchers are positive although modest ... and this news delights us! Could you tell me if, contrary to the protein therapy, gene therapy would be beneficial for all patients or the type of mutation also will affect the ...
- 01.08.2015
- Kalydeco® and salt supplementation
- Hello, In case of scorching heat salt supplementation is recommended for all CF patients. But what about for patients on Kalydeco®? Because their sweat normalizes, so we can assume that salt losses are less ...
- 01.08.2015
- Orkambi®
- Hello Has an Orkambi® marketing study been scheduled for heterozygous F508del CF patients? (Excluding gating mutations).And in children under 12? Can you send me the link of the site or sites that allowed you to answer me please? How have other mutations been tested in phase 2? Per class? case ...
- 01.08.2015
- Off-label use of Kalydeco
- Dear physicians, I am a mother with a 3.5-year-old son suffering from CF, living in Germany. My son has been diagnosed at the age of 2.5 years. Overall, his health condition is good. However, the illness affects markedly the gastro-intestinal tract. He has had a long-lasting colonization with ...
- 28.06.2015
- Kalydeco off label
- Hello, my daughter has the mutations delF508 and D1152H. How great is the chance to get Kalydeco off-label? There are obviously in-vitro studies that show, that the CFTR channel is functioning nearly completely in case of intake? There is already a study from Denver about this? In the USA human ...
- 18.06.2015
