Achieving independence is an essential part of your teen’s transition to adulthood. To make this transition successful, you will need to give your teen the freedom to try new things so they can develop a strong identity. A strong sense of self will lead to more confidence and greater self-esteem. This will allow them to be more resilient and cope with the challenges of living with Chronic Granulomatous Disease (CGD).
- Involve them in their healthcare. Make sure that they have a full understanding of specific health concerns and treatments, and how preventative care and an emphasis on wellness can help. Reinforce and praise efforts to take responsibility for their health, and emphasize how this is an important sign of maturity. Click here for transition checklists that can help you and your teen manage their health.
- Begin a dialogue with your teen, so that they become part of the decision making that influences their life. This dialogue should include asking them about their feelings, views, and experiences. Establishing an open give and take will show that you respect their viewpoint.
- Encourage your teen to explore their talents and interests. Help them set realistic expectations based on their capabilities and medical needs, but focus on what they can do. Having fun outside of family and medical appointments will build confidence and help them cope with their illness.
- Allow your adolescent to participate in school and social activities. Social life is central for all teens and your teen is no exception. These experiences shape their identity.
- Give them opportunities to make more decisions. Being a good decision maker requires practice. When people are given more opportunities to make decisions and learn from the outcomes of those decisions, they become better at making decisions. That’s why the saying, “Experience is the greatest teacher,” is true.
Planning your teen’s transition of responsibility should begin in early adolescence. Primary care providers and immunologist should be involved to insure a smooth transition, and the plan should be tried and tested long before your adolescent turns 18 or lives away from home. Ultimately, your teenage child should become independent and able to manage their CGD working with their healthcare providers.
- IDF Friends
Parents can meet with other parents through IDF Friends, the private social community created exclusively for patients and family members living with PI.
- IDF Common Ground
Teens can connect with other teens through IDF Common Ground, the social network for teens living with PI.
Source: Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases FIFTH EDITION Copyright 2013 by Immune Deficiency Foundation, USA. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice.