(BPT) - Since she was 8 years old, Nancy Mize Gonzalez dreamed of becoming a concert pianist. She practiced for hours a day every day, and it paid off. At 16, Gonzalez was accepted into a college music program to pursue her dreams.
"Everything was beautiful, and I was thriving," said Gonzalez. "But one morning I woke up, and my hands were stiff — fingers aching so much that it hurt to move them. Every single note was excruciating to play."
At 18, Gonzalez's world changed as her doctors diagnosed her with lupus, a chronic autoimmune disease.
A condition that affects millions
Gonzalez is not alone — as lupus affects millions of people worldwide.
"In lupus, the same immune system that helps us defend ourselves from infections mistakenly thinks that our own body is a harmful invader and attacks," said Dr. Roberto Caricchio, Myles J. McDonough chair in Rheumatology and chief of the Division of Rheumatology at UMass Chan Medical School. "Because lupus is systemic, it can attack any organ, such as the kidneys, brain, heart, lungs, and skin, as well as blood and joints. No one's experience is the same."
Despite its prevalence, many people are unaware of what lupus is or how it impacts people with the condition. That's why this May, during Lupus Awareness Month, the Lupus Research Alliance, the world's largest private funder of lupus research, and dedicated members of the worldwide lupus community are celebrating "Hope in Action: The Future of Lupus" — increasing awareness, supporting those living with lupus, and raising funds to fuel research to treat and one day cure this debilitating autoimmune disease.
Research breakthroughs provide hope
For decades, lupus has been one of the most complex autoimmune diseases for researchers to understand and treat, largely because the disease affects each person differently and involves many immune pathways. For 50 years, there were no treatments specifically approved by the FDA for lupus.
However, since 2011, scientific momentum has been building toward today's research renaissance. Four targeted therapies are now FDA-approved across systemic lupus erythematosus (SLE) and lupus nephritis, and hundreds of clinical trials are currently underway investigating potential new treatments. Researchers are uncovering new insights into how lupus develops, identifying biomarkers for earlier detection, and advancing therapies designed to target the disease more precisely.
One organization that has been at the forefront of lupus research over the past two decades is the Lupus Research Alliance. To drive discovery and development of next-generation lupus diagnostics and curative treatments, the Lupus Research Alliance funds the most innovative research, fosters scientific talent, and drives discovery toward better diagnostics, improved treatments and, ultimately, a cure for lupus.
Since its inception, the Lupus Research Alliance has:
- Awarded more than 675 grants and invested over $284 million in lupus research grants.
- Funded or supported the only four new treatments developed specifically for lupus.
- Established Lupus Therapeutics, the clinical affiliate of the Lupus Research Alliance, which is involved in more than 25% of active lupus clinical trials.
- Launched Lupus Ventures, the world's only venture capital fund dedicated to lupus, its manifestations, and related autoimmune conditions.
The Lupus Research Alliance's work and recent progress in lupus treatments have emboldened other organizations and individuals to do their part to raise awareness of the disease and support research. For instance, because of her desire to know more about her condition and to help others, Gonzalez switched careers.
After pursuing her M.D./Ph.D. degrees at Texas A&M College of Medicine, she will soon start a neurosurgery residency in Houston. She is also an executive member of the Lupus Research Alliance Young Leaders Board.
"Back when I was first diagnosed, I asked my doctors, 'What's lupus? What does autoimmune mean? Will I get better? What's the cure?' I was always met with the same answer: 'We don't know. We need more research,'" said Gonzalez. "Eventually, you get tired of hearing that. So, I decided to go back to school, to become a doctor and be able to give other patients the answers I struggled to find."
Everyone can do their part
While curing lupus may not be a reality yet, there is hope on the horizon.
"This is an unprecedented time in lupus," said Dr. Caricchio, Vice Chair of the Lupus Clinical Investigators Network (LuCIN), overseen by the Lupus Research Alliance's clinical affiliate Lupus Therapeutics. "The next step is ensuring that these advances translate into real-world approaches and therapies that improve daily life for people living with lupus — slowing disease progression while minimizing side effects."
Realizing that future requires collective work — and everyone can play a part. There are several ways to get involved — like donating to fuel new breakthroughs, taking part in research, and taking time to learn about lupus and raising awareness.
"With still only a handful of therapies ever approved for lupus, the next wave of breakthroughs could redefine treatment for millions worldwide — and we're right at that precipice," Albert T. Roy, president and CEO of the Lupus Research Alliance, said. "By working together, we have a real opportunity to bring people living with this disease closer to a cure."
To learn more about lupus, support those living with the disease, and donate to fuel breakthroughs, visit LupusResearch.org.
