It was back in 1977 when President Jimmy Carter signed Public Law 95-72 establishing a week-long observance to raise awareness for the autoimmune disease, lupus. Originally in September, the week was moved to October and lengthened into an entire month, but it wasn’t until 2009 when the Lupus Foundation of America was able to get Lupus Awareness Month shifted to May.
Although nationally recognized, there have been ongoing efforts to get communities more involved in promoting education and awareness of the disease, and on May 23, Santa Clara’s City Council joined in by proclaiming May Lupus Awareness Month in Santa Clara with a proclamation from Mayor Lisa Gillmor’s office.
“Lupus patients tell us time and again that the most important thing in their daily fight is the hope that they are not alone in their battle,” said Santa Claran and Executive Director of the Lupus Foundation of Northern California Erin Badillo. “All of us at the Lupus Foundation of Northern California thank Mayor Gillmor and the Santa Clara City Council for adding their voices to a chorus of hope.”
Often difficult to diagnose and explain to others, lupus is an unpredictable, chronic disease where flare-ups that can include joint pain and extreme fatigue that happen at a moment’s notice and can devastate those afflicted. According to the Lupus Foundation of America, 63 percent of lupus patients report initially being misdiagnosed, with over half of them visiting a minimum of four different health care providers before an accurate diagnosis was made.
At the age of 6, Santa Clara resident Marielle Vea, now 32, was diagnosed with the disease. Homeschooled as a youth and suffering through lupus of the central nervous system (CNS) and CNS vasculitis throughout high school, Vea persisted, graduating from Santa Clara High School and receiving an associate’s degree in liberal arts from De Anza College–while seeing the disease affect her lungs, stress levels and mental health. She continues to be a lupus advocate and participated in receiving the declaration from the City.
“This was the first time in a few years I was and felt stable and healthy enough to partake in the state and city proclamations alongside other lupus patients and the Lupus Foundation of Northern California,” she said.
Vea’s efforts and contributions have led to her being named the 2017 honoree for LFNC’s annual 5K run and walk.
“Being LFNC’s 5K honoree this year is great because it allowed me to share my story,” she said. “Some of my family members didn’t even know what I had gone through and being the 5K honoree was the perfect platform. I’ve also met a few other lupus patients through LFNC’s events or just out in public.
Drumbeat for a Lupus Cure will be held this Sunday, June 11 at West Valley College, 1400 Fruitvale Ave., Saratoga. Registration is $50 for individuals participating in a timed run and $40 for walkers, with registration for children ages 12 and under set at $20 for both walking and running. Visit www.crowdrise.com/Drumbeat2017 for more information.