Cystic Fibrosis (FAQs)

What is cystic fibrosis?
How is cystic fibrosis diagnosed?
Why does it happen?
What are the chance of it happening in another pregnancy?
How does cystic fibrosis affect a person?
Does a person with cystic fibrosis look different?
Can a person with cystic fibrosis walk?
Do people with cystic fibrosis need medical treatment?
What sorts of lives do people with cystic fibrosis lead?
Can people with cystic fibrosis have children?
Do people with cystic fibrosis have a reduced life expectancy?
Who can I contact for more information?

What is cystic fibrosis?
Cystic fibrosis is the most common serious disease amongst Europeans and it is caused by a faulty gene. Cystic fibrosis affects the lungs and the digestion from birth.

How is cystic fibrosis diagnosed?
Depending on the severity of the disease, symptoms may be apparent soon after birth, some may escape detection for months, even years depending on severity. A good indicator of a baby having cystic fibrosis is that they tend to taste salty if you lick them, and while this is not always accurate, it can tell parents that there might be something wrong with their child. A "sweat test" performed in hospitals measures chloride more accurately, which will detect the condition. The earlier the diagnosis is made the sooner treatment can commence and reduce the damage to the lungs.
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Why does it happen?
Cystic fibrosis is caused by faulty genes. Genes code the information that all cells need to function normally. Genes are passed on from one generation to the next one. When a baby gets a faulty gene that can cause cystic fibrosis from BOTH PARENTS, it is affected with the condition. It is estimated that about 1 in every 2000 babies born in Britain have cystic fibrosis.Who is a carrier? When a person has a normal copy of the cystic fibrosis gene paired with a faulty copy, they are said to be carriers. It is important to note that, a carrier will not be affected with cystic fibrosis. However, it will increase the chances of having a child with the condition. In Britain , about 1 in 25 people are carriers of cystic fibrosis faulty genes and 1 in 600 couples are at high risk of having a baby affected with the condition.
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What are the chances of it happening in another pregnancy?
The way cystic fibrosis is inherited is called "autosomal recessive" and it means that, in order to have the disease, a child must inherit two copies of the faulty gene, one from each parent. Thus, if both parents have a copy of the CF gene fault and a normal gene a child can receive both faulty genes. Thus, if X and Y are planning to have a child, there are four possibilities: 1. X and Y can pass a copy of the normal gene. 2. X could pass a copy of the faulty gene and Y a normal copy of the gene. 3. X could pass a copy of the faulty gene and Y a copy of the normal gene. Or 4. Both X and Y could pass a copy of the faulty gene. The first three possibilities would lead to a normal child and the fourth possibility leads to a child with cystic fibrosis. Thus in any future pregnancy there is a 25% chance that the baby would have cystic fibrosis. In more positive words, this means that there is a 75% chance that the baby won't have cystic fibrosis.
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How does cystic fibrosis affect a person?
Cystic fibrosis is a multisystem disease, in other words, it affects several systems of the body. It causes chronic respiratory illnesses, malabsorption, and electrolyte imbalance.
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Does a person with Cystic Fibrosis look different?
While people with cystic fibrosis have no distinctive physical alterations, they might be shorter and smaller than the average person. It is important to note too, that cystic fibrosis comes in different degrees of severity, so not all sufferers are the same.
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Can a person with Cystic Fibrosis walk?
Yes.
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Do people with Cystic Fibrosis need medical treatment?
Yes. First, people with cystic fibrosis should consume adequate amounts of protein, vitamins and 'higher than normal' amounts of fat to ensure growth. Respiratory infections are treated with antibiotics.Physiotherapy: Chest physiotherapy or postural drainage (vigorously pounding of patient's back repeatedly) helps to dislodge mucus obstructing the airways.Exercise is an essential part of treatment since regular exercise prevents the rapid deterioration of the lungs as well as improving physical strength.
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What sorts of lives do people with cystic fibrosis lead?
Depending on the severity of the disease, people with cystic fibrosis can lead a normal life.
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Can people with cystic fibrosis have children?
More than 95% of males with cystic fibrosis are infertile. Woman with cystic fibrosis are most likely to be fertile, although a few of them have abnormal cervical mucus that may contribute to infertility. Ideally, a woman with CF of reproductive age should have preconception counselling as well as 'optimization of her health prior to pregnancy.'
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Do people with cystic fibrosis have a reduced life expectancy?
The survival rate of people with cystic fibrosis has increased considerably during the last few years. Today the average survival rate is of approximately 33 years. However, modern management with antibiotics, enzyme supplements and constant physiotherapy can lead to an improved outlook to sufferers. Lung transplant has become an option for some people with cystic fibrosis.
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Who can I contact for more information?
Cystic Fibrosis Trust
http://www.cftrust.org.uk
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