Rare Disease Day 2019

Imagine the last time you got sick, like seriously sick. Now imagine if how you felt never ended. Imagine waking up day in and day out with little to no relief. You eventually learn to live with bothersome and painful symptoms. This is a glimpse of the life of near 133,000,000 Americans. Life with a chronic illness is not the glamorous life portrayed in the media. But that doesn’t make our lives any less. We are done being silent. We are done being shoved aside. We are here to be bold and colorful. It is time to show our true colors.

This year many people around the world are coming together to raise awareness to those fighting one of the six-thousand rare diseases. February 28 of this year will mark the eleventh anniversary of this campaign. For eleven years those around the world raised awareness through social media and their daily lives.

One in every twenty people will come to live with a rare disease. It is so important to raise awareness so these warriors know they are not alone. It is easy to feel isolated and alone when living with a rare disease because for many their illnesses are invisible. You aren’t able to go to the store and easily point out every person who has an illness.

This year’s theme is about connecting a patient’s health to their social care and services. More than seventy percent of patients struggles with daily tasks due to their illnesses and rely on others for help. This can be infuriating for some because society puts pressure on independence and self-sufficiency.

The organization will be focusing on advocating for better care when it comes to the social sides of living with a rare disease. There is so much that goes on behind the scenes from medication and appointments to access issues at public spaces or lacking support from their communities.

This day is not only about bridging the gap between health and social care; it is about bridging the gap between the healthy and the ill. This is us reaching out a hand and offering a true glimpse into our world.

This year many will be participating in showing their support by painting their faces with bright colors and posting online under the hashtag #ShowYourRare. How will you show your true colors, Cougars? Are you ready to bridge that gap?

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