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Gaining a diagnosis of cystic fibrosis for yourself or a loved one can be difficult to hear. But by finding out early and beginning treatment as soon as possible, it can mean that life expectancy can be increased by much more than previously.
Cystic fibrosis is a life restricting condition, managing it will affect your entire family, but it doesn’t have to mean life is over. There are many ways management is becoming better. But, What is cystic fibrosis and how does it affect the body? A person suffering from cystic fibrosis, will often look completely healthy. But what you can’t see is that they are actually suffering from a life-limiting condition and can affect every aspect of their day to day lives.
The condition is caused by a genetic mutation which stops cells in the body from functioning correctly. The cells cannot move salt and water around the body in the usual way and so it causes a thick mucus to build up in the lungs and digestive system, as well as many other effects.
Those who suffer from cystic fibrosis are particularly at risk from lung infections, and have to take special precautions to make sure they are not exposed to viruses and bacteria that could make them incredibly unwell. This can have a huge impact on theirs and their families lives. Imagine having to avoid most humans during the cold and flu season, or not being able to hug your child because you are unwell and do not want to risk making them sick.
Did you know that two people with the condition should never meet in person in case they cross contaminate each other? The symptoms in each person can be very different due to their personal genetics and cystic fibrosis genetics. Typically, symptoms are likely to include poor lung function, persistent infections and a difficulty in processing fatty food.
These symptoms usually appear during childhood, and so the earlier a diagnosis is made, through a DNA test is the most reliable, then treatment can be started a lot earlier and reduce the chances of complications later in life. If you are worried about having a child, you can also get your DNA tested to see if there is a chance you could be carrying a genetic mutation that could lead to cystic fibrosis in a child.
Living with cystic fibrosis varies
As mentioned the symptoms can change for each person as the body can react in many different ways. Typically the life expectancy for someone suffering from cystic fibrosis is around the mid-thirties, however with new treatments and earlier diagnosis many are now living well into their 40s and beyond.
This is why early diagnosis is so vital. It is also very important to avoid germs. This can include avoiding others with cystic fibrosis or those who are sick, disinfecting medical equipment and living area and not sharing personal items. Washing hands and being careful with personal hygiene is also important.
Depending on the severity of the condition, suffers may also need to carry out techniques each day to help loosen and remove mucus from the lungs. For example through postural drainage and chest percussion. By placing the body in certain positions and clapping the chest with cupped hands both gravity and vibrations can help move the mucus up into the mouth to be removed. Doctors may also recommend exercise to those well enough to do the same but also increase the strength and endurance of the lungs.
How can cystic fibrosis be inherited?
Cystic fibrosis mutations are considered ‘recessive’, which means that in order for a child to be more with cystic fibrosis both parents need to be carriers of the disease and if that is the case then there is a 25% chance of the child inheriting the condition.
This is how it is possible to carry it, but not be affected by it – for example, if you only have it in one of your chromosomes. In those circumstances, you can pass the mutation onto your child also, but they will not develop cystic fibrosis either.
The only way to be sure if you or your partner carry the mutation is through genetic testing, and then you can be best prepared to find out very early whether you should have your child tested for the condition as starting care early is very important.
How to care for a child with cystic fibrosis
It is completely normal to feel upset when receiving a diagnosis that your child suffers from cystic fibrosis. Step one needs to be making sure you are looking after yourself, both physically and emotionally. Eat good food, exercise and get plenty of rest (where possible when you are a parent!). Consider joining support groups, or seeking therapy yourself to cope with the emotional and mental aspects of caring for you child.
You will want to give them the best care you can, and you need to be well to do this. You will also need to be organised, keeping track of hospital appointments, medications and test results.
When it comes to child care, you will want to give your child a high calorie, high nutrition varied diet. This is so important because if their digestive system is affected it may mean they are not able to absorb all the nutrients they need. You might want to also talk to a dietician to make sure they are getting enough to gain weight.
You will also want to encourage play and movement as much as possible. Exercise can really help to move the mucus that has built in the lungs. Swimming or rowing, with your doctor’s advice and when they are old enough, can really help with strength and endurance.
One other aspect you will need to be aware of is that sufferers of cystic fibrosis can have a tough time replacing salt and water in their bodies. So they will need to drink extra fluids and eat salty foods, especially in warmer weather. You also need to make sure they get all the childhood vaccines recommended. This is so important.
You will also want to support them emotionally. At times it will feel very hard for them as they become more aware of having to manage a condition. Make sure they know you love them very much and celebrate their strengths. It can also help to give them some measure of control over their own treatment. The more you learn about the disease the more equipped you will be to help them and teach them to help themselves.