Building a Close-Knit Community: One Woman’s Journey with Lupus

The Society for Women’s Health Research spoke with Juana Mata, a patient advocate and co-founder of Looms for Lupus and Mata Advocacy and Support, about her journey with lupus. The following blog post captures takeaways from the conversation.

Juana Mata was 39 years old when she was first diagnosed with lupus, a chronic autoimmune disease that can cause inflammation and pain in the body. Her journey to diagnosis—which lasted more than one year after her most severe symptoms began—was filled with twice monthly visits to the doctor and frequent self-advocacy, which Mata said saved her life.

Mata knew something was wrong in 2008. She had begun experiencing joint pain, headaches, and weight and hair loss. Near the end of 2008, her symptoms got worse. As Mata describes it, she couldn’t even brush her hair because her fingers and hands were so stiff. Her symptoms—fever blisters around and inside of her mouth and nose; painful, itchy rashes all over her body; headaches; and fatigue—eventually became so severe that some days Mata couldn’t get out of bed. She also found herself having to take naps throughout the day because her headaches were so extreme.

Her doctors’ visits at that time led to several different diagnoses. Among them were rheumatoid arthritis, dandruff, and psoriasis (for which she was given a medicated shampoo to use on her hair and would later use for the rash on her face). After speaking with her family and yearning for answers, Mata decided to visit another doctor in Mexico, who was a family friend. She had bloodwork done and was given medicated creams for her rashes. Her bloodwork results revealed that Mata had a low platelet count (99,000 versus the normal range of 150,000-450,000).

Although Mata’s rash got better with the prescribed creams and medication, her pain and fatigue returned. In May of 2009, after the blisters in her mouth got worse, Mata went to urgent care and was adamant that she wouldn’t leave until she knew what was wrong. She suspected she might have leukemia, knowing that leukemia can have oral manifestations like ulcers. Mata’s new labs revealed that her platelet count had dropped to 6,000 and she was immediately admitted to the emergency room. It was during this visit that Mata was diagnosed with lupus. She remained in the hospital for seven days to receive treatment.

“The day I was diagnosed, my persistence in advocating for myself saved my life. I don’t think I would be here today if I hadn’t persisted with the doctor about getting the lab work done.”

Following her diagnosis, Mata and her sister, Estela, worked together to learn about lupus. Mata noted that the time following her diagnosis was a difficult one. Not only was she experiencing pain, aches, and fatigue, but she was also very depressed. She shared that she didn’t know if she was going to live to the following day.

Around that time Mata began loom knitting, which is easier on the hands than traditional knitting, as a form of self-care. She noticed that loom knitting kept her focused on what she was doing and not on her condition or how she was feeling. Estela and the rest of Mata’s family took notice of her new hobby and began joining her to knit. Each weekend, these family gatherings became a forum to discuss lupus—what it is, the symptoms of it, and how to provide support.

Mata said these get-togethers provided support not only to her, but also to her mother, who was struggling with Mata’s lupus diagnosis. Mata had trouble finding lupus information and resources in Spanish, the only language her mother speaks. It dawned on Estela that this was a place where she and her sisters could raise awareness. She began reaching out to members of the Hispanic community and others to host support groups for those living with lupus and their loved ones. This is where their organization, Looms for Lupus, began.

Today, Looms for Lupus serves as a support system for patients, caregivers, and loved ones. The organization offers knitting and other forms of art therapy to relieve stress, provides bilingual resources on lupus, and raises awareness to find a cure for the disease.

“Together we’re knitting a community of hope. We wouldn’t be able to do it alone. Through collaboration and help from others, we are working together with the hope that one day patients, caregivers, and loved ones will have resources and understand how they can better live with lupus or any other autoimmune condition.”

Mata’s diagnosis required making several changes in her daily life. The biggest challenge, she said, was not being able to spend time outdoors during the day because of her sensitivity to sunlight. This meant that she couldn’t always join her sons, who were 7 and 12 years old at the time of her diagnosis, when they wanted to go to the park or play sports. Instead, she and her family shifted to later outings, and she has to wear protective gear and use an umbrella. Mata can also no longer run, experiences “lupus fog,” and had to make adjustments at work. For Mata, who is a children’s social worker, that meant lowering her caseload, getting assigned to cases closer to home, and making adjustments to her work station, including installing an adjustable desk and using a different keyboard and mouse. Mata is also working to get better lighting in her workspace to help reduce headaches.

When it comes to navigating her lupus care, Mata feels she has been fortunate in several ways. She has insurance that allows her to get the care she needs (the one exception was that she was repeatedly denied coverage when the first medication for lupus was released); she has a supportive family; and she has a good relationship with her rheumatologist. Mata notes this is key because her doctor believes her when she says she’s not feeling well, sees her right away, and communicates quickly.

Mata also places a lot of value in her own lupus management. She knows and understands her body, has regular blood work done, takes medication, and keeps track of any changes in her body, no matter how small.

When asked what she wishes others navigating their own journey with lupus knew, Mata said, “to know they are not alone and there is help out there.” In terms of managing lupus, Mata recommends paying attention to your body and ensuring that loved ones and caregivers are aware of what you’re going through. As one example, Mata mentioned that steroids, which are often prescribed to people with lupus, can cause mood swings, and it’s helpful for those close to you to recognize and understand those side effects. Additionally, because of lupus fog, she stressed the importance of taking notes, including tracking symptoms, and setting reminders for yourself. With limited time in doctor’s appointments, these notes can help ensure you relay necessary information and ask the health care provider pressing questions. Additionally, Mata said it can be helpful to bring a caregiver or loved one to your appointment to make sure all questions are getting answered and to help capture notes and takeaways from the appointment.

Looking forward, Mata shared several steps she believes would support people with lupus. She emphasized the importance of funding for additional clinical trials that are more inclusive of minority groups, such as the African American and Asian communities; increased awareness of the disease; and more clinician education. Mata said, “I would love for doctors to understand that we as patients respect them, but we are the CEOs of our bodies. We know when something is not right.”

To learn more about Looms for Lupus, visit the organization website at https://looms4lupus.org/. Juana and Estela Mata also recently formed Mata Advocacy and Support, an organization that provides advocacy and support for health care organizations and legislation. Contact them here.