I’m 61 years old and live in a city over 100 miles away from a scleroderma care center. I’ve been diagnosed with the disease several times over the past 30 years, and it took me an equal amount of time to get referred to the Stanford University Scleroderma Center…
I love to have conversations with strangers and tell them about scleroderma. I take time during brief encounters at the library, supermarket lines, the nail salon, and airport gates. The challenge is to provide the information in two minutes or less to spark and keep the listener’s attention. I…
The face is what people see first on someone, and something is happening to mine because of scleroderma. I’m not a vain person or someone who primps in front of the mirror all the time. However, some small changes are starting to appear on my face. Scleroderma will snatch…
Yes, I’m a warrior. I was classified as one long before my scleroderma diagnosis since I’m an African American woman and single mom of two adult children. God has been preparing me to be a great warrior since birth. Learning that I had scleroderma was a relief. The…
Living with scleroderma has resulted in many new experiences, opportunities, and challenges for me. Since my diagnosis in 2001, I’ve spent much of my time educating others about how to manage symptoms, decrease stress, process mental health issues, navigate treatment options, and improve quality of life.
My mom has always instilled in me that beauty is in the eye of the beholder. When I was a child, she’d say to me, “What may be beautiful to one isn’t always beautiful to another, but that’s OK because that’s what makes people unique.” Amy makes goofy faces…
The feeling of overheating while being cold at the same time isn’t an unfamiliar symptom to me. For almost a decade, I have dealt with hot flashes due to medication-induced menopause. However, severe sweating strictly at night with symptoms of extreme internal heat, clammy skin, sleeplessness, and cold…
For years now, I’ve lived with a broken heart. At times, it’s physically painful. My discomfort includes aches, sharp and stabbing pains, fluid retention, swelling in my extremities, and difficulty breathing. But living with a dysfunctional heart is nothing compared with the emotional toll my heart disease has left…
Scleroderma is a disease that takes no prisoners. Not only does it attack the body and its vital organs, but it also causes the body to fight itself, wreaking havoc on skin cells, tissue, and the defense mechanisms that fight illnesses. I think of it as scleroderma…
A year is a long time to feel hopeless. Throughout my life, I have endured. I’ve taken my licks and kept moving in a positive direction. Even after I was diagnosed with scleroderma at the young age of 19, I remained blindly optimistic, no matter the potential outcome…
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