Growing Up Rare
Justice Rickenbach

Growing Up Rare

How my disease became a part of who I am

Justice is a young woman with Prader Willi Syndrome (PWS), a rare genetic disease that can have physical and mental symptoms. There are effective treatments for the disease, but as yet there is no cure. Justice shares her story as part of our series focusing on young people living with rare diseases: In Their Own Words.

Growing up rare has its challenges but it also has made me who I am today.

Because of my rare condition I have many fears. I worry about my health, school, friends and most of all my future. Rare means not many doctors or people understand my condition. When I get sick, I may not be able to find anyone to help me.

Finding the right doctors is as hard as finding the right teachers. No matter how much we explain my diagnosis the school struggles to understand. It is not that they don’t try, it is that they just don’t get it, they have never had a kid with PWS before. This causes me a lot of stress, which causes me to have a lot more health problems. Unfortunately, I end up missing a lot of school. Because I miss so much and it is hard to get caught up, I am not sure college will even be an option. Most kids my age know what they want to do and what college they want to attend. I can’t make plans for the future right now, as I am not sure exactly what the future holds for me yet.

Having a lot of medical issues has not stopped me from doing what I love. I may need to stop and take breaks or do things a little different than others but I manage. Riding horses, long bike rides, hiking, reading and art are all some of my favorite things to do. When I was born the doctors told my parents most of these things would not be possible, but I proved them wrong. I have the most supportive family and friends who believe in me and encourage me, and because of them I will do everything I put my mind to.

Having a rare disease has taught me that not everyone in the world is accepting and that I will always need to fight for everything I want. I have learned that people can be mean, especially if they don’t understand something. I have learned to sit through countless doctor appointments and therapies and I have had more tests done than I can count. I have also learned that every person is unique, every person has value and that everyone has a story to share, we just need to listen.

Growing up rare has given me opportunities that I would have never had if it weren’t for my diagnosis. I have friends all over the world and I have been fortunate enough to travel to see some of them. I have met people with other or similar rare diseases who have shown me courage and how to smile no matter what happens. Growing up rare can be difficult but it’s all about attitude. I know that being positive and sharing my story with others will give someone else the hope they need.

If I could tell people one thing about growing up rare it would be to not judge someone because of a diagnosis. We all have something; I just happen to have a name for mine. I am more than a diagnosis. It is hard enough growing up with all of the perfect pictures on Instagram, growing up rare makes it even harder. Be kind, be understanding, and try to learn about people’s differences instead of bullying or leaving people out. We are all just trying to live our best lives.