Today is Rare Disease Awareness Day and since I have a rare disease called Cryoglobulinemia, I have a special interest in February 29th, 2016. It’s true that my particular autoimmune disease is very rare but when I place it within the greater context of the many rare autoimmune diseases, I see myself as one among many suffering from a poorly understood disease. It is estimated that 23,000,000 people in the U.S. have an autoimmune disorder; diseases that bear the common characteristic of the body attacking itself. Within my family, friends, and personal acquaintances, I know and love others who suffer from: Multiple Sclerosis, Sjogrens, Scleroderma, Interstitial Cystitis, Rheumatoid Arthritis, Polymyalgia Rheumatica, Excema, and one friend who I suspect has an autoimmune disorder that has remained undiagnosed for years. In fact, I know more people who suffer from mild to crippling autoimmune diseases than any other disease. If I add autoimmune disease to other rare diseases it soon becomes clear that Rare Disease Awareness Day is about everyone. No one is immune to falling victim to a rare disease and facing the accompanying vacuum of knowledge with subsequent, lack of effective treatment.
On this special day set aside to think about people who suffer from rare diseases, my hope is for those of us who live under the chronic weight of diseases with strange sounding names to be viewed as less uncommon. I hope we will be seen in our true light as part of the greater whole and that which inflicts us now could at any time, inflict you or someone you love tomorrow. Awareness is the beginning in the fight to end the ignorance surrounding rare diseases that will lead to research, treatment, and cures.
Knowing that you have taken the time to read this article gives this Cryoglobulinemic woman new hope. Thank you for taking the time to consider the meaning behind Rare Disease Awareness Day 2016.
