Kids are naturally interested in learning more about the world around them, and hereditary diseases are no exception. While you may be intimidated about discussing these chronic conditions which your kids, it doesn’t have to be a scary conversation. You can start with a few simple facts. Hereditary diseases are usually caused when a mutation in gene expression is passed from parent to child. These diseases are usually found in early life or middle age. You or your kids may know someone with a hereditary disease, so to increase awareness, we would like to share some encouraging and informative facts about genetic diseases.

Spinal Muscular Atrophy

Spinal Muscular Atrophy (SMA) is a disease that destroys motor neurons over time. This process means that the nerve cells in the brain and spinal cord that control walking, breathing, speaking, and swallowing will slowly lose their power over time. Despite this disease’s severe symptoms, many people with SMA are doing well, thanks to therapeutic drugs. One person who has helped empower other people who have SMA is Shane Burcaw. Shane Burcaw is a young man with SMA who has helped many other people with SMA get the wheelchairs, mobility equipment, and therapeutic drugs they need and can’t afford through his nonprofit Laughing at My Nightmare. At only 30 years old, Shane has also become a YouTube star. He and his wife, Hannah Burcaw, make various educational videos to raise SMA awareness on their YouTube channel Squirmy and Grubs.

Cystic Fibrosis

Cystic Fibrosis is a hereditary condition that can cause cells to produce too much mucus, sweat, and digestive juice. This disease usually occurs because a faulty protein creates too much mucus in organs like the lungs and pancreas. One incredible advocate for those living with cystic fibrosis is GraceRose Bauer. At 16, she singlehandedly created a line of clothing that is more comfortable for people with cystic fibrosis. She now operates as the leader of a charitable foundation supporting other individuals living with cystic fibrosis.

Huntington’s Disease

While Cystic Fibrosis and SMA appear early in life, Huntington’s Disease often appears much later. It happens due to a defective gene on the fourth chromosome that codes for a protein called huntingtin. This protein causes brain changes that produce involuntary movement in the body and cause a decline in reasoning skills over time. One amazing advocacy group for young people with Huntington’s Disease is the Huntington Disease Youth Organization (HDYO), a nonprofit that empowers people under 35 who have Huntington’s Disease. HDYO provides virtual and in-person resources to support people with Huntington’s Disease.

Explain Lifelong Diseases to Kids

To start discussing hereditary diseases with your kids, you may want to approach it by discussing how chromosomes work. Chromosomes are the thing you can find in each cell of the body that let DNA be carried from one generation to the next. They copy the gene material from both parents to a child. DNA is the material inside our cells that offers a blueprint for how our body is built. If one chromosome is missing or altered, it can change how the body works or what symptoms organs may experience. You can explain to your kids that while a missing or changed chromosome may make certain functions of the body more complicated, there are a variety of drugs, therapies, and support systems to help people with these conditions.

Explaining hereditary and chronic diseases to kids can be difficult. Despite this, it can help kids be empathetic to the struggles of loved ones and understand what it means to be chronically ill. Are your kids interested in supporting their family members by becoming doctors in the future? If so, check out our Teaching Kids About Biomedicine Blog.

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