Imagine your hands looking like they have been dipped in acid , spreading up your arms and past your wrists. Imagine waking up nightly and throwing up whole food (hours after having dinner). Imagine simple tasks or short walks leaving you short of breath, hardly able to keep a conversation going without stopping to catch your breath. Imagine fatigue to the point of feeling as if you were walking through cement or quicksand daily. Imagine skin so tight it feels as if it will split open if you move. Can you picture it?
Now imagine the person living that existence is a friend, a loved one, someone you know, someone close to you…ME! There are approximately 300,000 people in the United States living with Scleroderma of which approximately 100,000 are living with a severe and aggressive systemic form called Systemic Sclerosis. Yet, Scleroderma research remains underfunded.
It was 2016 when my SCL-70 antibody was found to be positive ultimately leading to my Systemic Sclerosis diagnosis. My Scleroderma story is a little different than most patients because I was already under the care of a Rheumatologist for a Rheumatoid Arthritis overlap diagnosis when I got really sick with what we now know is Scleroderma. Living in Los Angeles also was an additional blessing because the teaching hospital I am a patient at was familiar with this rare disease and investigation and work up didn’t take anytime, while most other patients struggle to receive a quick diagnosis and treatment. The diagnosis is not made on bloodwork alone but requires a work up by a specialist in Scleroderma. And, that is the reason I advocate.
Advocacy brings awareness. Awareness brings research. Research brings improved treatments. Improved treatments (arthritic fingers crossed) hopefully brings a cure for our rare disease community.
My biggest motivation is my family, my friends and my chronic illness/autoimmune disease community. I’m also inspired by my medical team who works together for my care while educating me about my disease and treatment.
Join the Scleroderma Community at Patient Rising