Wednesday, 2 May 2012

Cystic Fibrosis Week

   It's CF week, so I thought I'd post some information about CF, copied from the CF Trust site. Reading this brings me back to the reality of what my son may have to face. On the positive side several drugs are being trialled that may transform the lives of people with CF. There is even a gene therapy trial on here in the UK.

   None of these drugs will cure CF. But maybe one of them may help my Pup lead a more normal life. I hope so.

What is Cystic Fibrosis?
  • Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.
  • It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.
  • Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
  • Over 9,000 people in the UK have Cystic Fibrosis.
  • If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
  • Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
  • Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.
  • Each week, five babies are born with Cystic Fibrosis.
  • Each week, two young lives are lost to Cystic Fibrosis.
  • Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.

    From Cystic Fibrosis Trust

      This does not indicate what daily life is like with CF. Pup has it pretty easy at the moment, he is fit and healthy, as long as he does his twice daily physio, keeps active, takes his medication,  eats well and avoids infection. But many people with CF will be seriously disabled by the condition, need oxygen therapy, feeding tubes and have very restricted lives. Many have to spend long periods of time in hospital. Lung transplants may transform the life of a CF'er with severe lung damage.

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