My name is Kelly Ann Quinlan and I am 19 years old. I was diagnosed with cystic fibrosis at birth. My 24-year-old brother Michael also has cystic fibrosis, which is a challenge, as we both live in the same home but must live separately to a degree. We are very close to our parents and sometimes they struggle with the extra duties and constant cleaning that comes with raising two CF children.Read More
Typically somewhere between 12 to 14 years, CF patients begin to undertake more responsibility for their own care. The following is advice targeted to this age group.
The Road to Independence
Adolescence is a time when you are finding your own identity. It is natural that you want more independence, but it is also important that you take the right steps to keep healthy; this includes working cooperatively with your caregiver/parent and CF clinic team. Cystic fibrosis is a progressive disease, which makes staying on top of your health extremely important.
To begin the journey to more independence, it is essential that you are informed and learn to “take charge wisely”. The following are suggestions to help you get started:
Ask questions about your care such as why certain medications or treatments are completed.
Begin to more actively participate in your treatment e.g. “lay out” your medications and “set up” your equipment for treatment (for your caregiver’s review). This will build confidence and is an important step in the transition to self-care.
Research cystic fibrosis and what the future will bring.
Book your own CF clinic appointments. Get organized before appointments and make a list of questions.
Take the lead in communication with the CF clinic team members.
Nutrition for Adolescents
By now you’ve probably heard how important it is to eat high-calorie foods and take your nutritional vitamins and supplements. Adolescence can be a difficult time as the social stresses of media tells young adolescents that they must look a certain way. It’s imperative you talk with your CF nurse or dietitian to discuss ways to maintain your weight and adequate nutrition.
Below are a few documents to review, published by cystic fibrosis dietitians across Canada:
- Vitamins and Cystic Fibrosis
- Healthy Diet, Healthy Fats
- Healthy Nutrition for Cystic Fibrosis
- G-Tube Feeding: Eating Without Effort
Contributions from: Daina Kalnins, MSc, RD and Janey Hughes, P.Dt, CDE
Sexuality and Adolescents
To help you understand more about cystic fibrosis and sexuality during adolescence, read the following brochure that takes you through the common questions, along with your CF team:
Making the Transition from Paediatric to Adult Clinics
Once you reach the age of 18, you are considered an adult and this will transfer you from a paediatric CF clinic to an adult CF clinic.
In order to ensure a smooth transition and prepare you for this change, your paediatric CF clinic may organize a day when the adult CF clinic staff (physician, nurse and other team members) attend the paediatric CF clinic to meet you and your caregiver/parent. This is your opportunity to ask questions regarding what you may be concerned about. The adult CF clinic staff wants you to feel comfortable with them, just as you did with your paediatric CF team.
- Evaluation of a Multidimensional Cystic Fibrosis Transition Program: A Quality Improvement Initiative1,2
Need more information? Contact us at email@example.com.