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We
received an email of support the
other day that really brought home
the reason why the lads are out
there working so hard.
"My brother and I
have CF and I thought I would drop you a line to say thank you
for rowing for CF. Although my brother and I don't suffer badly,
CF is still life-affecting for us. Personally, I guesstimated
recently that I have taken almost a quarter of a million tablets
in my life, and twice a day physio can get boring, although
having the chance to have a lie down for half an hour when I'm
doing it is always good!
The real way that it
affects life is that CF, as I imagine most conditions do, has an
impact on so many people around you - my wife is bordering on
saintly in the way she has accommodated CF into our life
together, and a cure for me would have as much of a positive
affect on Helen and the two of us as well. At the moment my
brother and I have to be very careful about when we see each
other as each of us has chest infections that the other doesn't
and we don't want to share them! Don't get me wrong, I don't
believe that we are ever faced with a situation that we can't
cope with, but it can be tough to live with something like CF.
So really I just wanted to say thank you to the four of you for
the time, effort, sweat and toil that you are putting in, and
the commitment of your support team, to help us get closer to a
cure." Steve C
What is CF?
Cystic Fibrosis is the UK's most common life-threatening, inherited disease and affects more than 7500 babies, children and young adults. Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat and abnormal stools.
Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.
At present there is NO CURE for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CF Trust is to fund this work.
People with CF are living longer than ever before. Until the 1930s, the life expectancy of a baby with CF was only a few months. Today the average life expectancy for someone with CF is around 31 years.
Symptoms
CF causes the body to produce thick secretions that particularly affect the lungs and digestive tract. Symptoms of CF include:
o Troublesome cough
o Repeated chest infections
o Prolonged diarrhea
o Poor weight gain
However, these symptoms are not unique to CF as it affects a number of organs:
Lungs
It is common for people with CF to encounter difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage. To avoid the risk of cross infection, people with CF need to ensure they do not come into close contact with others with CF.
The Digestive System
CF affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, which can lead to poor growth, physical weakness and delayed puberty. There is medication that can compensate for the failure of the pancreas.
Other Affected Organs
In every ten babies born with CF, one is ill in the first few days of life with a bowel obstruction called me conium
ileus. This was indeed the condition that Ollie EHRHART suffered. In these cases, the me conium (a thick black material present in the bowels of all newborn babies) is so thick that it blocks the bowel instead of passing through. Babies with me coniumilius often need an urgent operation to relieve and bypass the blockage. Ollie received his operation after only 3 days in the world at Great Ormond Street Hospital after falling seriously ill at home. It really was a life saving operation as his bowel had split and his organs were being poisoned.
People with CF are prone to osteoporosis (thin, brittle bones) due to the nutritional and other problems involved with the disease. Adults with CF are at an increased risk of osteoporosis because of the adverse effects of steroids taken to control lung disease.
Although Cystic Fibrosis does not cause sexual impotency it can lead to fertility problems. In most men with CF, the tubes that carry sperm are blocked, which causes infertility. Because underweight women are more likely to have irregular menstrual cycles, the nutritional problems associated with CF may affect fertility. However, women with CF do produce healthy, fertile eggs so effective contraception is necessary.
Cystic Fibrosis can cause the blockage of small ducts in the liver. This only happens to approximately 8% of people who have CF, but it is a serious health risk and may necessitate a liver transplant.
Facts and Figures - these are harsh but true!
- Cystic Fibrosis (CF) is the UK's most common, life-threatening, inherited disease.
- Cystic Fibrosis affects over 7,500 people in the UK.
- Of the people with CF, 50% are under 15 and 70% are under 20.
- In the UK, 2.3 million people carry the faulty CF gene - 1 in 25 of the population.
- If both parents are carriers of the faulty gene, there is a 1 in 4 chance with every pregnancy that their child will have Cystic Fibrosis.
- Cystic Fibrosis affects vital organs in the body, especially the lungs and digestive system, clogging them with sticky mucus, which makes it difficult to breathe and digest food.
- Each week five babies are born with Cystic Fibrosis.
- Each week three young lives are lost to Cystic Fibrosis.
- Average life expectancy for someone with CF is 31 years.
- The Cystic Fibrosis Trust needs to raise £8 million every year to fund its vital work.
- We fund research aimed at understanding, treating and curing Cystic Fibrosis.
- We also aim to ensure that people with CF receive the best possible care and support in all aspects
of their lives.
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