“Scleroderma impacts my life everyday,” Alaina (dx 2013) says. “But I want to be able to show people that they ARE strong enough.”
Her journey with scleroderma began early in her childhood, as she was diagnosed at just 6 years old. “I jammed my finger playing football and a week later my finger was still bent,” she explains. “Bruises like lesions started showing up on my arm to my elbow. The skin slowly started to harden and I lost most mobility in my hand.”
After visiting multiple doctors without answers, she and her family eventually met with a rheumatologist at All Children’s Hospital in Florida, where extensive testing finally led to an official diagnosis of linear scleroderma.
In 2022, Alaina began noticing new changes to her body and health. “I started to notice that I could not close my eye all the way. The skin above my eye became hard and spread up into the right side of my head. An MRI confirmed that the scleroderma was in my head and causing extreme inflammation.”
Since then, the disease has continued to affect other parts of her body, including, more recently, her lung. “I have several conditions, including rheumatoid arthritis, POTS, lupus, and possibly VEDS,” she says. “Everyday I experience severe joint pain, tachycardia, nausea, shortness of breath and fatigue.”
“Scleroderma has taken so much from me and I terribly miss my old life. Everyday is a battle for me and I know I’m not the only one,” Alaina says. Even in the face of these challenges, she remains determined to advocate for others and raise awareness. “I am committed to doing everything I can to help, like using my voice and passion to tell everyone about scleroderma.”
“Throughout my journey I have learned many things about myself, but only recently I have recognized my strength and passion for helping people,” she says. “I always wanted to be at work just to try and make someone laugh and have a better day.” Today, Alaina works full time as a physical therapy technician and plans to start school to become a physical therapist assistant next year.
For Alaina, research represents possibility and progress. “Scleroderma research is so important to me because I need answers and help,” she says. “More research means more hope for me.”
Thank you, Alaina, for sharing your story and for using your voice to uplift others in the scleroderma community.
