If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can’t do certain things. It’s especially hard when the child is very young. For example, a child with common variable immunodeficiency (CVID) may not understand why he or she can’t roll around on the lawn or help you rake leaves. (The mold that gets kicked up could cause infection.)
Or, there you are, sitting in the doctor’s office with your child and the doctor is spitting out one medical term after another. It took you a while to catch on to what the meanings of all those words were, but imagine how tough it is for a little one.
IDF to the Rescue
The Immune Deficiency Foundation heard the confused cries of parents and came up with a very cute, age-appropriate booklet to help you explain CVID.
Written by Sara LeBien, the booklet is called, “Our Immune System.” It has adorable illustrations and covers the definitions of many terms you and your child probably hear at every doctor visit. It also describes healthy practices and offers explanations about various treatments. This type of literature is truly helpful because no child likes to feel different than their peers without the means to explain those differences.
If your child has a different rare disease, the National Organization for Rare Disorders is a great place to find resources not only about disorders, but also for finding support.