When your child is diagnosed with Scleroderma, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Scleroderma.
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Scleroderma is an autoimmune disease that can change the way our skin, blood vessels, muscles work together. The disease can affect just the skin, but it may also affect other organs within the body. People with scleroderma may have areas of thicker skin, stiffness, and feeling fatigued.
Fear, heartache, worry, isolation, sadness: all of these feelings and questions about the future come with a new diagnosis or treatment. Our instinct is to just smile and tell our kids it will be ok—that they will be fine.
Mia’s mom, Julie, describes her as a silly, smiling, happy-go-lucky girl. She plays the ukulele and volleyball and she loves to sew, recently making pillowcases. She is a well-rounded, beautiful typical 13- year-old girl, with one unique challenge. Mia has localized scleroderma, also known as morphea, on the left side of her face, affecting her chin and the area next to her eye.