In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness.
Tune in as Estela & Juana share:
- what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA)
- that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril
- that if Juana had not advocated for herself, she wouldn’t be here today
- how Estela was diagnosed with fibromyalgia, along with her daughter
- why Estela pursues holistic treatment to manage her pain
- the distinct role of “invisibility” in their illness experiences
- their experiences of bias in the healthcare system
- why they created Looms for Lupus, and the importance of providing patient resources in Spanish
- their tips for managing chronic illness with grace
Transcript coming soon!
In the meantime, check out these related episodes: