In my dreams, kids go to their parents on the last day of February (in 2016, February 29th) and say, "Mom, what's a rare disease?" They've heard the phrase on the morning talk show on TV or at school from a worksheet they did as a class. Their friends are talking about it. When that happens, that's when World Rare Disease Day has "arrived" from a national awareness event standpoint, like Breast Cancer Awareness Month, Memorial Day, or Black History Month.
We don't need a parade, or even a whole month, but national attention on our one main day of awareness would be both encouraging to the rare disease community and educational for those not (currently) affected by rare disease.
It could train a new generation that hoofbeats (symptoms) don't just mean horses (common diseases); they just might mean zebras (rare diseases). And maybe then, many patients would not be waiting over seven years for an accurate rare disease diagnosis.
So what should you tell these young ones, when they ask, What is a rare disease? Who are the people affected by rare diseases?
What would an ideal conversation look like if your child never mentions rare diseases to you?
In terms of the rare disease that affects my son, Hunter Syndrome or MPS II, I've embraced five points that I think are important to discuss with your kids:
1. You will meet people with rare diseases in your life. Kids can understand statistics at their level. Explain that each rare disease only happens to a small number of people in the world; I give examples of enough people to fill as small as a school auditorium to as large as a football stadium, but those people are scattered around the world. Explain that with all the different types of rare diseases, chances are that 1 in 10 of their friends may now or someday have a rare disease.
2. They didn't cause it. It's important to emphasize that people affected by rare diseases such as Hunter Syndrome or Angelman Syndrome, Spinal Muscular Atrophy or Krabbe Disease, didn't cause their disease. Children often see something wrong and wonder whose fault it is. Is that a bad person? Why did they turn out that way? Emphasizing to children that people affected by rare diseases didn't cause their disease is important.
3. They can't change it. Explain that most rare diseases are caused by a genetic change that happened before the person was born. They are usually born with the disease and they can't just turn it off and have it go away. Just like the child's blue eyes or curly hair, their height or the fact that they look like their dad, some things about us are just part of who we are. Those are good examples to help them understand. Share that doctors are looking for ways to treat and even cure rare diseases, but someone can't just wake up one day without the disease, as much as they'd probably like to.
4. You can't catch it. Children often innocently hear the word "disease" and assume that it's like a cold or the flu and if they get near someone with a (rare) disease, they might catch it. It can cause them to stare from afar or not become friends or play with children who are different, whether it's from a rare disease or any disability. Assuring that they can't "catch" a rare disease (or any disability) from another child or adult is important.
5. In many ways, they're just regular kids/people. Children and adults affected by rare diseases have many of the same dreams and wants and needs as everyone else, even though they may have some additional needs that are different. They want to have friends at school, they want to learn and play and grow up just like most kids do. They may take more medicine, go to the hospital, and may not understand or have the exact same abilities as others, but we aren't all the same anyway, right?
So on World Rare Disease Day this year, if your kids don't ask you about rare disease, maybe sit down and have the above conversation with them anyway. Sharing these five things about rare disease with your kids can help spread the message of awareness, spur research in the next generation, and encourage inclusion.