“She handled everything that came her way with so much grace and strength, and she never complained,” says Taylor S. of her late aunt Carol (diagnosed in 2023). “No matter how hard things got, she still found a way to smile and share her infectious laugh with all of us. That is something I will carry with me forever.”
For Taylor’s family, the earliest warning signs of Carol’s condition were easy to overlook at first. “The first symptom she noticed was Raynaud’s,” she recalls. “Her hands and feet were often purple and extremely cold, followed by swelling and stiffness. That is when we really started to become concerned.”
Carol’s symptoms progressed rapidly, and she soon began to suffer from kidney issues, increased stiffness and thickening throughout her body, changes in her voice, and significant weight loss. “She had to go through dialysis three to five days a week,” Taylor shares. “It was heartbreaking to see someone so strong go through that.”
Carol had gone from enjoying boating, spending time with family and friends, and walking her dog Ollie, to needing assistance with basic daily tasks — all within less than two years of her diagnosis. Even so, she never stopped showing up for the people she loved.
Through it all, her family refused to leave her side. “My Uncle Rick and her boys — Danny, Kurt, and Ricky — were everything to her, and her rock through it all,” Taylor says. “No matter what she needed, they were always there to help without hesitation. We truly came together as a family to support her in every way possible, along with her friends, who were there time and time again.”
She did everything she could to show up for her Aunt Carol in the ways that mattered most. “I would visit her whenever I could, and sometimes I would bring my whole nail kit over to give her manicures and pedicures,” she says. “It was one of the few things that really made her feel like herself and feel pretty, especially since she was unable to use her hands for just about anything. Those moments meant so much.”
Taylor’s advice to others supporting a loved one with scleroderma is simple: “Just be there. Be present through both the good and the bad times. Those small acts of love and support truly matter more than people realize.”
For Taylor, turning that grief into action has become deeply personal. “Many people are still unaware of what scleroderma is, and I want to help change that,” she says. “We need continued research to better understand and treat this challenging disease so that other families do not have to go through the same pain, and hopefully one day, a cure.”
Thank you, Taylor, for honoring Carol’s memory and sharing her story.
