Today is my “holiday.” If you don’t know the name of it that’s okay, today. But, next year remember that “Rare Disease Day” is the last day of February.
My rare illness is known as IgG4-RD, a connective tissue disease order that can cause inflammation and joints all over the body, causing widespread damage and failure. It’s hard to diagnose but is highly treatable.
There are hundreds of other rare disease like mine. You probably don’t know the people with them because, like me, they work beside you every day, take pills, go to physical therapy/doctor appointments, have procedures/surgeries and endure pain in silence. We often hide our “super ability” to function as equals while managing pain and discomfort that would make other cringes.
Some would pity me because I’ve been “sick” for more than two decades. I’m also black, a woman and over 40. I see none of these as a hinderance. They are merely facts.
I’ve vowed that I will not hide. I will not be ashamed and I won’t accept less than I deserve. I’m rare, beautiful and blessed to overcome every day. I will make a difference in how rare diseases and sufferers are perceived so we can find cures.
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