Below is the video and transcript of a talk I gave on “the soul of rare disease statistics” at a Rare Disease Day Reception to lawmakers and rare disease families at the Minnesota State Capitol on February 28th, 2018. I am very thankful to the Minnesota Rare Action Network and the National Organization for Rare Disorders for the opportunity!
95% of rare diseases do NOT have an FDA approved treatment, and 30% of children living with rare disease will not live to see their 5th birthday. One rare disease, spinal muscular atrophy, is the number 1 genetic killer of kids under the age of 2. Additionally, 80% of rare diseases are genetic in origin and in total, 1 in 10 Americans are living with some form of rare disease.
That’s a lot of data, but these are the points that are often brought up when discussing rare disease. Although accurate, these numbers are missing life. Every statistic brings together the lives of many people fighting rare disease in a world that does not offer a lot of options to such patients. Data is helpful when looking at big picture, but it lacks a soul – a story.
This month I launched a “Rare Stories Interview Series” on my blog, where I’ve had the honor of listening to other rare disease patients tell their story. In time, I will feature each patient’s story, as means to give faces to these large statistics. It is my goal to give more rare disease patients the incredible experience of sharing their story with the world while bringing awareness to their conditions. I created my blog, OwningMyStory.com, just over a year ago, as a way to finally tell my story of life with a rare disease. As a kid with Ehlers-Danlos Syndrome, I never wanted to talk about this thing that made me different. However, as I got older, I realized by denying this part of my story, I was losing an opportunity to impact the future of rare diseases. I was tired of pretending life with a rare disease is easy, and as a result the experience of finally being open about my health and challenges I face was extremely cathartic and increased my confidence immensely.
I wanted to then give other rare disease fighters the chance to feel the power of “owning their story”, especially those who might not have the means of sharing their story any other way. In a community based on uncommon diseases, stories like this build community. They make us feel less alone in our fight. One woman told me “it’s because of advocacy like this that [she] still feels hopeful of the future” while another said “[they’ve] kept quiet for years about [their] rare disease, and this project is the outlet [they] needed.”
The stories I’m working on represent a small portion of the statistics, but are the soul of the numbers. Our stories give this data meaning. So, I urge anyone working in rare disease advocacy or health policy to take the time to listen to rare disease patient stories. The rare disease community may sound small, but as we come together to share our stories, our strength grows. We find power as we realize our stories are more alike than different.
As Brene Brown writes, “When we deny the story, it defines us. When we own the story, we get to write a brave new ending.” It’s now up to us to write a new ending for the story of rare disease.