“By holding this fundraiser, I hope that others are inspired to learn more about scleroderma and about people within the community,” says Sofía Q., (dx 2006) who recently hosted a Facebook birthday fundraiser in support of the Scleroderma Research Foundation. “The community deserves visibility and a cure.”
“My journey fighting scleroderma started in elementary school, and continues to be a significant part of my life,” Sofía explains. Shortly after her 8th birthday, Sofía first noticed a thick white streak of skin on her forehead. “I remember us waiting to see if it would change or go away on its own, but it soon became clear that it wasn’t going anywhere,” she recalls.
“I also remember clearly the first dermatologist that told my father it could be scleroderma,” she says. Over the next several months, Sofía and her family visited several physicians, who all confirmed the diagnosis shortly after her 8th birthday.
These days, Sofía reflects on her scleroderma journey with gratitude. “Regardless of the constant illness and fatigue that comes with treatment, I am immensely grateful that treatment options were even available to me,” she says. “I have seen that scleroderma can have devastating effects on a person’s life, as well as the lives of their loved ones. I would love to see the day when no one else needs to lose their life from this disease.”
Sofía’s commitment to research stems from a desire to change the future for those living with scleroderma. “There is no cure, and since it is so rare, not many people in the world know about it,” she says. “The Scleroderma Research Foundation aims to change both of those things, and it is an honor to be able to contribute to its cause. ”
By hosting her recent fundraiser, Sofía hopes to inspire others to join her in spreading awareness. “Even if people are unable to donate monetarily, it still gets the word out about scleroderma,” she says. “At the end of the day, it is the people fighting scleroderma who inspire me.”
Thank you, Sofía, for sharing your story and for your dedication to raising awareness about this challenging disease. If you’d like to make a difference in the fight against scleroderma, consider hosting your own Facebook fundraiser.
