Previously diagnosed with Rheumatoid Arthritis (RA), Juana was still feeling really ill. She went to her doctor, where her blood was drawn and she was told to go home because, “she didn’t look sick.” Her labs would be ready the next day, but something inside told Juana to stay and demand her lab results that day.
When her labs came back, her platelets were dangerously low at 8,000—a normal platelet reading is near 150,000. She was sent to get another lab test and then transferred to the ER. Within hours her platelets dropped to 6,000, and by midnight they were life-threateningly low at 2,000. Had she simply gone home as directed, her story may have ended very differently. But she dug deep and demanded the care she deserved. That act of courage and self-love likely saved her life.
In the ER, Juana was diagnosed with Lupus, and spent the following seven days in the ICU. As if RA wasn’t enough to deal with, Juana found herself facing polyautoimmunity, the term for patients with two autoimmune conditions. Some individuals have up to three or more, a condition called Multiple Autoimmune Syndrome (MAS).
Lupus is a complex autoimmune condition that is difficult for even the medical community to diagnose and treat. Juana’s sister, Estela, who works in healthcare, struggled to understand how to help her sister. When Juana received her diagnosis, the family didn’t realize what lupus was exactly, all they knew was that there was no cure, and that it could kill you.
Searching for answers
Juana and Estela learned that lupus is a disease that occurs when your body’s immune system attacks your tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.1
There are three different types of lupus: Systemic lupus erythematosus (SLE), Cutaneous lupus, drug-induced lupus, and rarely neonatal lupus. Most people who develop lupus develop SLE. Women ages 18-64 and African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander are groups more at risk for developing lupus.
As the sisters researched and learned more about Lupus, they began to spread the word in their community and provide support in English and Spanish. “After searching for information in Spanish, because my family is Spanish-speaking,” Juana recalled. “I realized there wasn’t much information.”
Outlets and advocacy
Part art therapy and part distraction, Juana started loom knitting as a positive outlet after her infusion therapy. Soon her mother and other sisters began knitting too, and together they created Looms for Lupus, an organization dedicated to helping others understand lupus and cope with the disease.
Looms for Lupus is a nationally recognized organization that provides art therapy, support, social connection, education, and advocacy for their communities. The founding sisters advocate in Washington D.C. and their home state of California for patient’s rights on issues such as step therapy.
“We are the CEOs of our bodies. We know when something isn’t right,” Juana said. Each person needs to make sure that they are heard. Looms for Lupus is committed to making certain patients are empowered to advocate at their doctor’s office and receive the healthcare they deserve.