Lisa Capretto

I can’t remember a life without scleroderma.

My mother was officially diagnosed in 1993. As she and my father sat us three young children down to tell us this, they struggled to find the right words. “Mommy is sick” seemed to be the best phrase for a 10-year-old, 7-year-old and 5-year-old to understand. Still, being the oldest, I blurted out the toughest question a scleroderma parent has to face.

“Mommy, are you going to die?”

There was a pause before my mother, in her typical quirky way, said very simply, “I’m not planning on it.”

But the doctors were planning on it. My mother had a 20 percent chance of surviving the next five years. Her joints were stiff, her arms wouldn’t raise, fatigue was constant. She couldn’t walk up and down the stairs to do the laundry. She couldn’t run to the grocery store without napping first. She couldn’t continue her career in real estate. And she couldn’t stop praying that she’d be around for her children’s college graduations.

Fast forward 12 years. My mother stood proud at my college graduation. She, along with my father, walked me down the aisle at my wedding several years later. She can now raise her arms and walk up stairs. She is a miracle.

That’s why my scleroderma story is a story of hope.

It’s true that I don’t know what life would be like without scleroderma. My mother still can’t visit me in frigid Chicago during the five months of winter because of her Raynaud’s and she still can’t walk far distances without resting. But, for our family, scleroderma is a part of life. A happy, full life. We know that we’re the lucky ones, and we’re grateful.

Yet, scleroderma is still a daily struggle for those who have it, in any form. It is crippling, both physically and emotionally; it is cruel; and it is constant. And for far too many, it is a killer.

It’s important that we give scleroderma patients a voice, especially those who can no longer speak. We must continue to hope, to pray and to support one another, and it’s time to rally the outside world to join this cause.

Because a cure starts with awareness. That is why I share my story today. Stories like mine are few and far between for scleroderma patients, and successful treatment options are rare. By talking about scleroderma and educating others about the disease, we’re all taking steps closer to making hope more than just a quiet emotion. We’re making it a reality.