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Telling Kids About a Parent’s Rare Disease

Five tips for keeping it simple, honest and reassuring.

Hemophilia patient Pete Dyson reading a book to his young children
Pete Dyson, who's living with hemophilia B, at home reading a book to his two young sons.

Whether you have just been diagnosed with a rare disease or you have been managing one for a while, talking to your children about your condition can be challenging. You don’t want to worry them but it won’t work to keep them in the dark.

“Parents sometimes try to protect children from unpleasant situations by keeping them uninformed. However, children can sense when something is wrong in the household. A lack of information may be more troubling to them than actually knowing what is going on,” said Mary Dunkle, Education Programs Senior Advisor at the National Organization for Rare Diseases (NORD).

Having a rare disease, which your child has never heard of, can add another layer of complexity.

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Even young children can be very perceptive and their imagination can be far more frightening than the truth, according to a journal article about parental illness from the American Academy of Family Physicians. Speaking with kids and teens directly – at a level that’s right for their age and level of understanding – can help them feel safe and informed about the situation. These conversations also can prepare them for changes in your family’s routine.

Hemophilia patient Pete Dyson didn’t plan to tell his young son about his rare disease. Nolan, who’s now 5, was supposed to be sleeping and decided he needed a drink of water. He came downstairs to find Dyson doing his intravenous infusion of coagulation factor.

“He started asking questions about what I was doing and why I was doing it,” Dyson said.

Dyson answered him and tried to explain that it’s something he needs to do to stay healthy, comparing his infusion to the multivitamin Nolan takes. That was the right approach, according to Tom Bradford, a medical social worker with Christiana Care Health System in Delaware.

“The most important thing is to help the child by giving them a safe place to talk to a parent or other adult caregiver and by answering their questions and providing as much information as possible that remains developmentally appropriate.”

Consider these tips when talking to a child or teen about your rare disease:

1.           Be (Age-Appropriately) Honest

What do experts mean by “developmentally appropriate” and “age appropriate?” As kids grow up, they develop physically, of course. But they also develop cognitively. Cognitive development means brain development and the ability to think and process information. So a child’s age and level of cognitive development will impact how well he or she will grasp something like a rare disease, especially one without obvious symptoms that can be seen. A health problem like a broken leg is easier to understand for a younger child.

Depending on their age and stage, kids and teens will also have different emotional reactions to the news that a parent is ill. Though it’s not easy, parents should strive to find the right messages and the right level of detail. Avoid painting too rosy a picture, Dunkle said.

“Honesty – without going into excruciating detail – is usually best,” she said.

2.           Stay Open to Questions

Be prepared to answer a lot of questions from your kids, including some of the same ones more than once. Keep in mind that it’s OK to say, “I don’t know.” Older kids may have questions about hereditary diseases and whether their health could be affected, too. And younger kids will have questions of their own. Even Dyson’s 3-year-old son asks about his rare disease and treatments, he said.

With young children, remember to use simple words, a recent article in industry trade publication IG Living recommended mentioning “primary immunodeficiency,” by name, but pair it with a basic explanation, like “Dad’s body is having trouble fighting germs.” Then, describe in simple terms what may happen next, such as having to take medicine or going to doctor appointments. Give simple explanations for medicine or medical equipment you are using.

3.            Seek Out Quality Resources

For clues about what might be right for a child’s age and stage, look for books that talk about illness generally and those created by patient advocacy organizations to explain rare diseases. The National Hemophilia Foundation recently recommended a series of graphic novels it helped develop.

The Immune Deficiency Foundation offers several resources for kids, including downloadable books “The Immune System” and “A Zebra Story.” The Jeffrey Modell Foundation has a kid-friendly website for learning about primary immunodeficiency. Books about managing feelings also can be helpful, Bradford said.

4.            Set Expectations

If a parent is living with a rare disease, it’s bound to impact the day-to-day of family life. Do your best to prepare kids for times when you might need to rest or skip a school activity. Help from your spouse, a grandparent or trusted friend can help your child feel more secure if you can’t be there. Let them know that you are in this together – as a family.

5.            Raise a Rare Disease Advocate

Attending an awareness-raising walk or a rare disease community event can help your child better understand a parent’s condition – and realize your family is not alone. Seize the opportunity to do some education about rare diseases, Dunkle said.

“When you are speaking about a rare condition, it can be especially troubling to a child because he or she will not be familiar with the condition,” she said. “It’s especially important to let children know that while only a few people may have the rare condition, many people have rare diseases.”

Though his sons are only 3 and 5, Dyson said he’s trying to demystify his disease for them. He lets them “help” when he’s preparing to do an infusion. They hand him supplies for his treatment or throw the trash away.

“My philosophy has always been that if we treat it as if it is no big deal, then the kids will grow up realizing that it is just a part of life and no big deal,” Dyson said. “It was definitely a gamble telling my kids, but I think our family philosophy and mindset of not sweating the small stuff and getting through things together helps us deal with issues like this. It is a great teaching moment.”