For parents, a diagnosis of cystic fibrosis will give rise to a whole host of questions. It is precisely because the disease is so rare that most parents initially do not know how to deal with it. Life with the disease is filled with challenges for those affected and their families and this is why it is important to seek specialist support.
The first port of call is contacting a specialised cystic fibrosis centre that offers qualified treatment and targeted, comprehensive advice on managing everyday life. Those affected and their family members are also shown how best to integrate the daily therapies into their daily routine.
Cystic fibrosis demands that various therapies are used every day. This includes breathing exercises, diet and sport therapy and physiotherapy as well as taking medications. Inhalation therapy is particularly important. It may be helpful to develop certain rituals with your child for all the different treatments. This makes it easier to incorporate these into daily routine.
Like all children, children with cystic fibrosis need normal social contact and to experience being part of a group. Many children with cystic fibrosis go to a crèche or kindergarten. The management, teachers and possibly other parents should be informed about the disease. This also applies later on when the child goes to school: good communication and information help others to understand the disease. This ensures that young people have as normal a school life as possible.
Diet has a major impact on the progression of cystic fibrosis. Children affected should therefore have as high calorie a diet as possible. They often have to take certain medications with their meals to aid digestion. Regular exercise is also important for their wellbeing. Sport boosts the immune system and improves lung function. Those affected should seek advice on the best types of sport.
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