The last day in February is designated in many places as “Rare Disease Day.” It’s a day to raise awareness with the general public and law makers of the many rare diseases and the struggles those living with these diseases face on a daily basis. If you or someone you know is living with a rare disease, I encourage you to speak up and help raise awareness in your community. I also encourage you to contact lawmakers and encourage funding for rare disease research. Those of us with rare diseases deserve the same care as those living with common illnesses. We must stand up for ourselves. We must continue to share our stories and encourage others to do the same.
Living with Complex Regional Pain Syndrome and Gastroparesis, I’ve gotten used to the question, “What’s that?” When I get asked that question, I take time to explain because the only way we are going to bring awareness is by sharing our stories with others.
A disease is considered rare in the United States if it affects fewer than 200,000 people. However, if all people with rare diseases are grouped together, we wouldn’t be considered rare. Roughly one out of every ten people, ten percent, has been diagnosed with a rare disease. For more information about Complex Regional Pain Syndrome and other rare diseases, you can visit the National Institute of Health’s rare disease page here.
Images from Pinterest.