cystic fibrosis

cystic fibrosis

1. how do you get it?

   • Cystic fibrosis is caused by a faulty gene that a child inherits from both of their parents. A child has to inherit two copies of this faulty gene – one from each of their parents. Their parents will not usually have the condition themselves, because they will only carry one faulty gene and one that works normally.

2. symptoms of cystic fibrosis

   • Some of the main symptoms of cystic fibrosis can include: •recurring chest infections •difficulty putting on weight •frequent, wet-sounding coughs •diarrhoea •occasional wheezing and shortness of breath

3. treatment

   • there are currently no cures for cystic fibrosis however there are a number of treatments are available
     • antibiotics, medicines to widen the airways, medicines to make the mucus in the lungs thinner, special techniques and devices to help clear the lungs, medicines to help the person absorb food better

4. affects development

   • social
     • may have difficulty interacting with other children due to periods of absence from school
     • may feel embarrassed by effects of CF which may lead them to not go out into public.
     • may withdraw from social situations and stay at home and become isolated
     • limited amount of friends due to struggle with interacting
     • avoid exposure to harmful bacteria and other bugs
     • often require long hospital stays away from family and friends
   • physical
     • very capable of participating in normal physically active play and activities
     • regular exercise is important
     • might need more frequent breaks to cough and have a drink
     • digestive system are affected which means harder to eat and digest the food
     • developing bone disease which means the bones go thin and will need frequent scans, the bones can decrease the amount of movement allowed.
   • emotional
     • feelings of being different
     • can lead to bullying
       • feel worthless and isolated
     • body image stereotypes
     • feeling of frustration due to taking care of their treatments
     • feel insecure, anxiety could lead to depression due to lack of control of certain aspects of their lives.
   • intellectual
     • difficult when sick because cannot attend school
     • lack of sleep, which can cause a struggle to concentrate
     • can lead to mental health issues
     • many thoughts and feelings
     • struggle to express thoughts

5. mealtimes

   • have to eat extra calories
   • need to eat more protein
   • will need supplements at mealtimes such as:
     • vitamins to replace vitamins lost in digestion
     • salt supplements, especially in hot weather or when exercising to replace salt lost through sweat
     • pancreatic enzymes to assist with digestion

6. coughing up the mucus

   • it usually takes around 20-30 minutes and you have to position your child correctly and clap your child's back or chest with cupped hands very quickly and rhythmically.
   • after clapping you have to apply vibrations to help loosen and move the mucus.
   • after the vibrations you need to make you child huff and cough to bring up the mucus
   • they have to do this every day maybe several times a day depending on the person.