Simplified: There are 300 million people worldwide who live with a rare disease. Here's how Sioux Falls is doing its part to raise awareness and support during Rare Disease Month this year.
Why it matters
- February was chosen for rare disease awareness since it's the only month with fewer than 30 days, or a rare month. Rare Disease Day is Feb. 28.
- It's harder to garner support for rare diseases in rural states according to Kendra Gottsleben, who founded Rare by Design as a way to bring more representation to people like herself who have rare diseases.
- This year, Falls Park and the Arc of Dreams will be lit up with rare disease day colors (blue, green, purple and pink) in honor of research and support for rare diseases.
"That stigma of people staring a lot or feeling uncomfortable or like they don't know what to say, the more we see visual representation everywhere, the more it's not going to be a big deal," Gottsleben said.
Tell me more about rare diseases
There are 6,000+ identified rare diseases and approximately 95% have no treatment at this time, according to Gottsleben.
- It also takes a long time for people to be diagnosed with a rare disease, and finding treatments can take up to 10 years she said.
- Gottsleben also said that 72% of rare diseases are genetic, but that others can develop later in life with little to no warning.
Because rare diseases are so rare, Gottsleben said it's hard to find representation in rural areas and cities like Sioux Falls.
- Organizations like Rare by Design and recognition days like Rare Disease Day help create community and bring awareness to these lesser-known diseases, she said.
- They also help parents of children with rare diseases to find support systems and get connected with doctors and treatments.
"People with rare diseases and disabilities deserve to be included in all spaces," Gottsleben said. "They should be at the board rooms. They should be in businesses. We should see representation wherever we are."
How can I help?
Gottsleben said that learning more about rare diseases is one way to be an ally. Recognition can help garner more attention from researchers to help find treatments as well, she said.
You can also find more information about Rare Disease Day here.
"Our world is composed of so many beautiful people," Gottsleben said. "It doesn't matter what our backgrounds are. That is what our world is, and how wonderful it is because if we all look the same, I believe that would be a very boring world."
