By the time someone with cystic fibrosis reaches adolescence, they will hopefully have settled into a routine when it comes to managing their condition. Many of the differences at this age are related to your budding independence.
For parents, you want to ensure that your child is empowered and well equipped to face the challenges of the teenage years, and then into adulthood. For young people with cystic fibrosis , you are about to take part or full responsibility for your treatment, while at the same time you are emerging as your own person with your own ideas and ambitions.
During your teenage years, your cystic fibrosis clinic team will begin the process to move your cystic fibrosis care from a children’s hospital to an adult hospital. It’s a gradual and well-planned journey, with your health and well-being being the most important things.
As your child moves through primary school he or she may become more independent; however, it is still useful for teachers to understand about cystic fibrosis and how it affects your child.
Teachers and child care staff can learn more about cystic fibrosis here.
The school/teacher’s responsibilities are to:
- Ensure your child is taking the required medication and food/snacks.
- Ensure quick and easy access to the toilet is provided if needed.
- Provide catch up work if your child is absent.
- Be aware of any changes e.g. symptoms of dehydration, tired, on the toilet more often.
- Promote good hygiene and infection control practices.
Your responsibilities are to:
- Provide the teacher with the medications required by your child to be taken at school.
- Provide the teacher with clear information about medications (how, when, storage, any side effects).
- Inform the teacher of any additional medications required during the year.
- Inform the school/teacher if your child has to go to hospital, clinic appointments or other absences.
- Inform the teacher if there are any changes to your child’s health.
Getting a job
In most cases, cystic fibrosis shouldn’t limit your choices when it comes to finding a part-time or full-time job. Some things to think about when looking for a job are:
- Is it easy to get from your home and your cystic fibrosis clinic to your workplace?
- What is the physical environment like at the workplace? Are there any obvious health risk issues such as bad air quality or dusty conditions?
- What are the facilities like? Is there a kitchen with a fridge, well-maintained bathrooms and a rest-room or first-aid room? Would you have to climb stairs to get to work or is there a lift?
- Does the employer offer flexible working conditions such as work-from-home or flexible hours?
- What is the sick leave allowance, and (if you need it) would they let you have extra unpaid days off?
You have no obligation to disclose your cystic fibrosis when you have a job interview, and anti-discrimination laws make it illegal for employers to ask about any medical conditions. In fact, if you do not wish to disclose your cystic fibrosis at all – even after you get a job – then you don’t have to.
For more information about employment and the workplace, visit our Work and Cystic Fibrosis Factsheet.