frdeitrues

Cystic fibrosis - help at school

Even though I look OK I may not be feeling OK

  • I would rather not be seen as ‘different’ from my friends.
  • By the time I have arrived at school each day I will have undergone about an hour to an hour and a half of treatments.
  • I have to do the same after school.
  • Sometimes if I have a chest infection this regime has to happen three times a day.
  • Sometimes I can have episodes of coughing that can be really embarrassing.
  • It's helpful if people can be patient and then if I need anything I can let you know.

Cystic fibrosis affects my digestion

  • To help with this I have to take enzymes with most of the foods that I eat, this means with every snack and meal.
  • Sometimes this can look like a lot of capsules but it is what I need.
  • It would help if these could be kept in a safe place or with an adult that I know so that I can have them with my meals. 
  • It can help if I can take them in a more private place.
  • This can also mean that I need access to a private toilet whenever I need to (Creon enzymes can cause poo to be really smelly hence the need for privacy).
  • An ‘Exemption Card’ would really help me.
  • I may also need to use inhalers at school.

Other effects

  • I can often feel breathless and moving around in a large school can be difficult for me.
  • It really helps if I can leave class a bit earlier.
  • Maybe my teachers could make sure that they don’t wait right until the end of class to give out homework.
  • When I have chest infections I may not be in hospital, but at home.
  • An extra set of books at home is really helpful because then I can carry on with my work when I am feeling well enough.
  • Also it means I don’t have to carry a very heavy school bag between home and school.
  • It can be helpful if I can go to the top of the lunch queue, but sometimes I worry that this will make me appear ‘different’.
  • I can have very bad headaches in the mornings (similar to a hangover).
  • This is caused by having low oxygen levels, or if I have to have oxygen during the night.

When I am off school sick

  • If I am off school sick then ask my friends to pass on information to me.
  • If I am off for more than 2 days, email, post or ask my sibling to take home school work for me.
  • I may be too sick to do it immediately but I can catch up when I feel a bit better.
  • It is very difficult going back to school and not knowing what everyone else is doing.
  • My school’s VLE really helps me keep up with my work when I am ill at home or in hospital.
  • When I am so sick that I need to be in hospital, please contact the hospital school teachers with details about my work.
  • A lightweight laptop with all my work, given as part of the current Government scheme is very helpful.

Physical education

  • Let me set my own pace during PE lessons and provide an alternative PE activity if the outdoor session takes place on a cold day.

Communication

  • I often miss time from school because of Cystic Fibrosis, and that can make it really hard to keep up with friends and the social life at school,.
  • Just having some messages from teachers and my class can really cheer me up and make me feel less anxious about returning to school.

It makes a huge difference for me to know that there is an adult at my school who knows all about my condition and who I can talk to if I am worried or unwell.