When someone says "it's in your genes," they are often referring to the way you look or how you act. But genes also play a critical role in our health. Hereditary diseases, also known as genetic disorders or inherited conditions, are caused by a passed genetic abnormality or mutation from one generation to the next.
If an inherited condition, such as heart disease, Huntington's disease, cancer, or mental illness, runs in your family, it doesn't always mean you'll develop that condition or pass it down to your children. However, it's important to have the possibility on your radar.
Although it's instinctual to protect your children from unsettling news, they need to know if a genetic disorder runs in your family so they can learn how to live with it. But when should you talk to them? How do you let them know it's something they should think about without letting it define who they are?
Deciding when to talk to your child about a genetic condition in the family can be difficult. The conversation takes courage. Your child may have a genetic condition that is affecting them or will affect them, or your child may be at risk of inheriting a genetic condition. Either way, the approach is similar.
It's normal to think you'll do more harm than good by telling your child, especially if you don't feel comfortable with your own level of understanding. Keep in mind, they may appreciate hearing about it sooner from you rather than finding out later from someone else. Although a younger child's understanding may be limited, they are generally more accepting. If you wait to tell them until they're older, they may be upset to learn you withheld the information.
It's helpful to ensure your child will be engaged in the conversation. You can begin by saying, "I want you to know more about a disease we have in our family. Do you want to talk about it?" If your child says no, ask if they'd rather talk with someone else, such as another family member or a doctor.
If your child agrees to the conversation, allow questions to guide you. Hereditary diseases are complex and confusing. Make sure you tailor your approach to your child's level of understanding. Younger children learn gradually, so provide small amounts of digestible information and room for questions. If you don't have an answer, don't be afraid to say "I don't know." If necessary, seek the advice of a genetic counselor.
Check in to make sure your child understands what you're saying.
Have an ongoing discussion rather than one conversation.
Encourage open discussion where your child can ask questions at any time.
Books can introduce young readers to hereditary diseases through a character who has a condition.
"Wonder" by R.J. Palacio shares the story of Auggie. He has an autosomal dominant condition called Treacher Collins syndrome, which is most often caused by an abnormal gene or mutation. Neither of Auggie's parents are affected, but if Auggie has children, they would have a 50-percent chance of inheriting the syndrome. The story focuses on the impact Auggie's condition has on him and those around him.
"Born that Way" by Susan Ketchen introduces animal lovers to genetics. Fourteen-year-old Sylvia is diagnosed with Turner's syndrome, a condition in which a female inherits one X chromosome. The story illustrates how Turner's syndrome can affect a teenage girl who happens to be crazy about horses.
In "Double Helix" by Nancy Werlin, an 18-year-old boy is faced with adult decisions. Eli's mom has Huntington's disease, and he has to decide if he wants genetic testing to find if he'll be affected, too.
You can suggest these stories, or other books, to your child or read them together.
Remember, children are often focused on school, friendships, and their own personal interests, so their response to a genetic risk may not be monumental. As adults, we tend to worry about the future, and kids tend to live in the moment. Keep the discussion open so they can come to you with any questions as they arise.