This second story of Scleroderma Awareness month starts with a simple definition for scleroderma: “fight like hell.” This is how Ile views living with scleroderma.
Though Ile first experienced Raynaud’s and other early symptoms starting in 2015, it wasn’t until December of 2019 that she was officially diagnosed. “By November I had gone from someone who had enough energy to work three part-time jobs to someone who had to call out sick because she couldn’t get out of bed,“ she says.
A few months later, Ile faced a major medical emergency. “On January 31st, I woke up around 3 am, noticed something was very wrong, and called a friend to take me to the hospital,” she says. Within 24 hours, she was put into a medically-induced coma. “When I finally woke up 25 days later I was on a ventilator, trached, unable to talk or move at all,” Ile says. “It took a three-and-a-half month stay in three different hospital systems to get me back out into the world.”
While still in her medically-induced coma, Ile’s nephew sent her a homemade card. His drawing of a cat and the words “Ile’s 9 lives” on the front “became a mantra during my recovery.” Ile knows that “I may be different than before, but I definitely have more fight in me for many lives to come.”
It’s because of people like Ile, and her warrior attitude towards scleroderma, that the SRF is laser focused on funding and facilitating the most promising research aimed at improved therapies, and ultimately, finding a cure. Join us in this effort by helping to raise awareness. #SayScleroderma and spread the word.