Teens diagnosed with Chronic Granulomatous Disease (CGD) and their families face not only the day-to-day challenges of anyone at this transitional stage, but they also face learning how to manage the effects of a rare and chronic disease while nurturing growth towards adulthood.
Much of the parental tips for children living with CGD will apply to teens, with the understanding that new issues arise at this age, some of their new desires may include wanting to:
- Have more independence
- Talk effectively about their condition with peers
- Participate in sports and other fun group activities
- Date and have relationships
Help your adolescent develop strategies to educate peers and to explain their condition, including the appropriate terms for diagnosis and treatment. Teenagers already struggle with identity issues and confidence, and feeling different can further complicate this matter. Individuals with X-linked CGD are known to be prone to having short stature, and the reason for this is unknown. That is not true for the other molecular types of CGD. Also, because CGD is rare, your adolescent may not know many other children with the same illness. They must develop strategies to cope with questions and misconceptions they may come across. If they are able to clarify peer questioning and talk about their experiences, peers will be less likely to gossip about the condition.
Start conversations about dating not only to encourage positive decisions but also to help you get to know your teenagers as they mature. Dating is a hallmark of adolescence, and talking to your adolescent about how to talk about their CGD and safety concerns is important. Although rejection is a normal part of dating and people reject others for all sorts of reasons, reiterate that if someone rejects them because of CGD, that person is not the right person for them. It is important to let your adolescent know their value and that people with CGD date, marry, have children and lead full lives.
Is typical for teens to also struggle with not wanting to take their medicine, especially if they feel well. They may not feel as though they need it any longer. While they are better able to understand CGD and its treatment, they should not be expected to react as adults do.
You can help by explaining to your child how important medications can be in the management of CGD, even when they begin to feel better. With the approval of your child’s healthcare provider, your child should participate in school, sports, or other activities whenever possible. Physicians may advise against playing football and soccer because these high contact sports can cause cuts and scrapes that lead to infection. While playing on the grass with shoes on is fine, players may also be exposed to muddy or dusty patches in the ground. Sliding into dirt or dust, such in when running bases in baseball can increase exposure to fungi. Patients with CGD enjoy participating most other athletic activities, such as swimming in chlorinated pools, tennis, basketball, badminton, cycling, running, soccer, ice hockey, skiing, golf, dance, gymnastics, etc.
It is important to note again that every patient with CGD is different, and some types of sports may or may not be appropriate for your child. Please talk to your child’s healthcare provider to help tailor a program that is right for your child’s particular interests and condition.
Be sure to include your teenage child in discussions with their medical team when possible. This will help children feel included and give them a greater sense of control over the situation. Listening to your child is always essential, and it may be helpful to encourage your child to express these emotions through art, drawing, music or reading.
Resources for Professional Assistance
Many adolescents with CGD often feel misunderstood. As much as family and friends may attempt to understand the impact of these diseases, only patients can really understand what this condition feels like. Encourage your teen to connect with peers with CGD and other primary immunodeficiency diseases through the IDF Teen Program.
Having other adolescents to relate to is invaluable in providing support. Not only can it foster supportive friendships, but their involvement with others with primary immunodeficiency diseases can also help them feel that they are neither alone nor different from others. IDF Common Ground is a social networking site designed specifically for adolescents, where they can connect with other young people who understand what it is like to live with a primary immunodeficiency disease: www.idfcommonground.org. IDF Teen Escape weekends, which are held a few times each year in various cities throughout the country, are designed to help teens develop coping skills, promote and nurture friendships and provide educational guidance for those living with primary immunodeficiency disease.
IDF holds biennial National Conferences and Retreats, during which there are programs and presentations for teens with CGD. Teens may not feel they need to attend such programs, but those who do attend have extremely positive experiences.
Seek professional assistance if your adolescent displays symptoms of depression or anxiety. They can feel isolated as well as overwhelmed by the impact of feeling ill, limitations in productivity and awareness of financial burdens. It is important for you to recognize the signs and symptoms of depression and contact a mental health professional. Symptoms of depression include:
- Shifts in overall mood and outlook
- Changes in eating and sleeping patterns
- Negative self-talk
- Increased isolation
- Irritability, anger
- Hopelessness, tearfulness
Helpful information for both teens and parents can be found in the teen section of the IDF website, www.primaryimmune.org/teens and in the Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases chapter titled “Adolescents Living with Primary Immunodeficiency Diseases.”
- 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.