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In 2023, Rare Disease Day is globally observed on February 28th, and people all around the world raise awareness for battles with different rare diseases. It is a great opportunity for people to share their stories, and shed light on diseases that affect over 300 million people globally. You can read about this day on rarediseaseday.org. They have some great resources and you can learn more about this day, which started in 2008!
What is a rare disease?
A disease is considered rare if it affects less than 1 in 2,000 people. About 3.5%-5.9% of the world’s population is living with a rare disease.
Some crazy facts:
- More than 90% of rare diseases are still without FDA-approved treatments (Source).
- The day is actually celebrated on the most rare day on the calendar – the last day of February! (clever, right?)
- Over 25 million Americans are living with a rare disease.
If you want to see a full list of rare diseases, check out the Rare Disease Database. There are various diseases that I recognized, but also so many that I had never heard of before. It gives me some perspective into how many different diseases are out there.
My disease, Common Variable Immunodeficiency, is defined as a rare disease, and this is a special day for me to acknowledge my journey and see what others have been through as well. I love when I see others with CVID speaking out and sharing their stories. We have such a great community where people uplift each other. The beginning of the journey is one of the hardest parts. I remember struggling so much with my diagnosis, and I have heard others talk about it as well.
How a rare disease has affected my life
It always feels weird to explain my illness to others. Sometimes I just want to ignore it and hide. I spent so much time just saying I was tired or not feeling well to avoid explaining it to friends, peers, coworkers, and others. I never wanted it to seem like I was using my disease to garner attention or sympathy. It sometimes feels better to avoid mentioning it.
Having a day where people acknowledge and talk about rare diseases is so helpful because I realize that I am not alone and that my illness isn’t so “weird” after all. A lot of people around the world have had similar experiences and are brave enough to share about it. My disease is just another part of my life, and it’s never going away, so I constantly have to make sure I am taking care of myself and validating my feelings. I don’t have to have all of the right answers and explanations for everything.
I’m hopeful for the future, and those who observe and celebrate Rare Disease Day are advocating for patients with various diseases so that research and treatments can continue. I know that I can still live a full, happy life. Like everyone else with these diseases, this is not what I pictured for myself. But, life is unexpected, and sometimes we have to embrace it.
I want to continue to empower myself and others and show that this diagnosis is not just a life sentence. Your life is not over, it is just beginning. Allow yourself to feel all the feelings, and prepare yourself to have a great life ahead of you!
- Swollen Lymph Nodes – cancer, or something else??
- When Chronic Illness is a Full-Time Job
- “I Am Immunocompromised” Card for Doctor’s Visits