Anyone Know WHY BLF DON'T Really Cover Cystic Fibrosis

Did have a look on website and information IS pants really

There was nothing about carriers or so called healthy carriers AND given this no research HOW they know the healthy carriers WHEN there is no research.

The talk say its common autosomal recessive disorders among Caucasian and its impact is being felt in some uk cultures cities.

BUT do nothing.

Take for example the say a healthy cf carrier is healthy but when you look deeper into know or unknown mutation you can suffer Autosomal dominant and or Autosomal recessive

Ant that like double dutch TALKING and this nothing about impact of cf is having on uk asian population.

Well there is information BUT its all

Cloak n Dagger stuff.

This more to this CFTR AF508 mutation's and so called healthy CF carrier and lung disease risk than meets the eye we are told.

Be nice if organizations come clean ON why there seem to be a BIG who are on why its not in public interest to disclose or screen for CF carriers and OR the so called healthy carriers.

So i find myself asking if all Cystic Mutations are not know HOW can they say with confidence there are healthy CF carriers.

I guess thats how why genetic councillors come into being GIVEN smoke screen mirrors.

And farse that appears to be management or shall we say none management of CF carrier status and inpact on health GIVEN its Autosomal dominant and or Autosomal recessive nature of disease.

Last edited by

4 Replies

oldestnewest
  • Probably because CF Trust has own very good website cysticfibrosis.org.uk/

  • Have seen theres and blf link to there.

    Here is interesting fact CF or Blf website wont tell you IF carrier of cf either mutation.

    And your lung disease risk .

    A few mutations in of he CFTR gene have been identified in people with isolated problems affecting the digestive or respiratory system. For example, CFTR mutations have been found in some cases of idiopathic pancreatitis, an inflammation of the pancreas that causes abdominal pain, nausea, vomiting, and fever. Although CFTR mutations may be a risk factor, the cause of idiopathic pancreatitis is unknown.

    Changes in the CFTR gene also have been associated with rhinosinusitis, which is a chronic inflammation of the tissues that line the sinuses. This condition causes sinus pain and pressure, headache, fever, and nasal congestion or drainage. Other respiratory problems, including several conditions that partially block the airways and interfere with breathing, are also associated with CFTR mutations. These conditions include bronchiectasis, which damages the passages leading from the windpipe to the lungs (the bronchi), and allergic bronchopulmonary aspergillosis, which results from hypersensitivity to a certain type of fungal infection. Additional genetic and environmental factors likely play a part in determining the risk of these complex conditions.

  • Hi JeffAjaxSmith,

    The CF Trust are a charity that BLF works with - they are solely dedicated to CF and do a lot of very good and important work for patients and carers affected by the condition - their website is cysticfibrosis.org.uk/

    BLF's aim is to work collaboratively with them but not to compete with them - as such you might find that some of the information on their site is a bit more 'in depth' than some of our information. CF is still an area of interest to BLF and we have recently funded some research into the condition.

    I'd definitely recommend viewing their website as it has lots of very good information which may be of interest.

    Hope this helps.

    Thanks,

    Ben

  • Hi cheers i did give both sites good going over looking at stats mortality and healthy carriers.

    Am only interested given my own problems and my dna report.

    And being CF carrier given my issues could explain alot of my symptoms from lung to stomach and melabsortion.

    Vie my DNA report those genes CFTR & AF508 was highlighted EVEN tho am not true carrier but a healthy one i think other stuff is going on with those genes thats make me predisposed given i was already a carrier WELL if that makes seance

You may also like...