Rare diseases are complex and poorly understood by adults; they are even harder to comprehend for children.
Sickle cell disease (SCD), is a condition in which red blood cells, due to abnormal hemoglobin, are distorted and shaped like crescent moons or sickles. These misshapen cells are consequently, suffocated, and deprived of oxygen. They cells stick to the sides of the person’s veins, and as a result, cause chronic pain crises. SCD can affect every organ system, including the lungs and circulatory system, leading to a higher risk of stroke.
SCD takes a huge physical and mental toll on its victims. SCD is marked by struggles within the healthcare experience being that there is stigma and disparity in treatments.In addition, families that raise children with sickle cell disease undergo a series of tribulations, financially and emotionally.
With all the adversity associated with SCD, it is imperative that patients are educated from a young age about their health. Children who may have siblings or classmates that suffer from sickle cell disease should also be educated so that compassion and empathy are present from a young age, and these skills will then be transferred to any person with any ailment they meet in the future.
Fortunately, there are books that families can use to start a conversation on the topic. Parents can find A Sickle Cell Coloring Book For Kids: A Creative A to Z guide on growing up with Sickle Cell Disease for Children on Amazon, a coloring book that breaks down concepts about SCD, such as its definition and its effect on not only them but their family. Additionally, Extraordinary! A Book for Children with Rare Diseases opens a dialogue about belonging and rare disease, using a puzzle analogy.
Books like these can be used as a tool to ease children’s fears, educate them, and help them feel represented in stories.
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