Today we’d like to introduce you to Juana and Estela Mata. Them and their team share their story with us below:
Juana Mata the oldest of seven siblings almost lost her life in 2009. Juana had been diagnosed with Rheumatoid Arthritis in February of 2009 soon after she began having many debilitating, painful symptoms. Some of the symptoms that are were fatigue, swollen joints, painful sores in the mouth and nose, headaches, butterfly rash, hair loss and low platelets.
In May 2009, after spending a fun-filled day of activities with the family that included attending church and bowling, she was not feeling well and decided to go to urgent care. In urgent care, Juana was there for several hours, she was seen by the provider, sent to get routine lab work, and sent home. Juana insisted to get lab work reviewed that day because she was concerned of all her symptoms plus the petechiae all over her body. She was concerned and was persistent. Due to herself advocacy the provider finally convinced ordered another lab test that would be ” Stat” done and results would come back to provider immediately. Juana got the second lab test it was then that the provider was concerned because Juana’s platelets were at 6,000 (six thousand) normal platelet count is from 150,000 to 450,000. He immediately asked Juana if she was bleeding, had a hematologist review labs and Juana was sent to the Emergency room. Juana had labs ordered again in the ER, by then all results were in the first routine lab platelet reading was 8,000, the stat reading was 6,000 and the final reading was 2,000. There was a shift change at midnight and this new doctor reviewed all her chart and diagnosed her with Systemic Lupus Erythematosus (SLE). SLE is an autoimmune condition where the lupus causes inflammation in your body and it attacks many different parts of your body systems, your organs, joints, skin, kidneys, brain, heart, lungs, and blood cells. It is difficult to diagnose because it mimics so many other illnesses, there is no cure, and it is more common in women of color. That day Juana was admitted to the ICU and was there for seven days fighting for her life. If she would have gone home that day with a diagnosis of Anxiety and not advocated for herself she would have died on May 30, 2009.
In 2009 there was not much information about Lupus and extraordinarily little information in Spanish. Living with Rheumatoid Arthritis and now with a chronic autoimmune and life-threatening condition, Juana felt overwhelmed and started feeling depressed. Her condition was overwhelming not just for Juana but for the family as well. Juana was determined to not only raise awareness, support others with this condition but also empower others by sharing her story.
Juana underwent Chemotherapy and many other treatments, which caused her to feel depressed. She began loom knitting at home and would gather with her family for support. The Mata family is a close-knit family and supported each other in their weekly gatherings. This is when they realized that perhaps like them, there were many other families that would benefit from resources and support in their language. Art therapy was therapeutic, for Juana, for her mom, sisters, and sister-in-law so they included art therapy and other techniques to relief stress including mindfulness, meditation, art therapy, yoga to their bilingual support groups for not only lupus patients but for their caregivers and loved ones as well.
In 2011 the Mata sisters founded Looms for Lupus, a nonprofit organization that provides support and resources to those living with Lupus and overlapping conditions, their loved ones, and caregivers. They develop programs particularly bilingual programs to provide vocational training and develop skills needed to continue living with Lupus and overlapping conditions and to develop skills to aid those they support. The tools and workshops are for both overall mental health and physical health. Looms for Lupus collaborates with other organizations, non-profits, government entities and stakeholders working in promoting healthcare access, lupus and overlapping conditions program initiatives and research.
Since 2011, Juana and Estela, “The Mata Sisters” have been active in the lupus, fibromyalgia, autoimmune communities as well as raising mental health awareness and support. They facilitate bilingual and Spanish monthly support groups. Juana and Estela are dedicated to raising awareness at a local, state, and national level for Lupus, Fibromyalgia and Mental Health from receiving proclamations from local cities and state of CA. Raise awareness, advocate at the local, national, and international levels. They share their stories with legislators, host, volunteer and attend symposiums to empower others living with Lupus and overlapping conditions.
Juana and Estela are members of the Multicultural Task Force, Patient Advisory Council, and part of the 32nd District Mental Health Consortium led by Congresswoman Grace Napolitano. They have received state and congressional recognitions individually and for their nonprofit for their work in the community. They both serve as Virtual Advisory Team for the NIH All of Us Research Program additionally Juana serves as a National Ambassador. Juana and Estela have been nominated for WEGO Health Awards, Hero of Pain Awards and are Patients Rising Delegates. In 2020 they presented a Patient Perspective poster presentation at the Annual American College of Rheumatology Conference.
In addition, Juana has served as a patient advisor for the world’s largest personalized patient platform, served as Scientific Peer review panel directed Medical Research Program for the Department of Defense as a consumer advocate and 2018 48th District Woman of the Year.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
It has not been a smooth road. Juana has been admitted to the ICU 4 times with life threatening diagnosis caused by Lupus. Lupus has been able to work however she has been unable to take care of her children, when she first was diagnosed, her sons were 7 and 14. She did not go on complete disability however she struggled with daily activities due to chronic fatigue, painful joints, migraines and bed bound.
Lupus attacked her lungs at one point, Lupus Pleuritis is inflammation of the lining of the lungs. This caused excruciating amount of pain, so much that Juana would pass out of the pain. This caused irreversible damage to her lungs.
Juana’s life changed, she could no longer be outside the home due to sensitivity to the sun, not being able to be around many people due to a low immune system.
Since Lupus can be an invisible illness, many times Juana looks fine when in reality her body is being attacked, or her lupus is in an active flare. Many people around her may not believe that she is sick and she has lost many friends due to cancellation of plans.
Having to take extra precautions, like what we are dealing with during covid-19, Juana had been taking these precautions since she was diagnosed with Lupus.
Having to track your symptoms daily and monitor labs, adhere to treatments, go to many many specialist appointments can be overwhelming.
Lupus has attacked your blood, skin, lungs, brain, joints, kidneys and lately her heart. She was recently diagnosed with AFIB.
Along with Lupus, Juana has many other autoimmune and overlapping conditions such as Sjogrens, Rheumatoid Arthritis, Fibromyalgia.
As you know, we’re big fans of Looms for Lupus. For our readers who might not be as familiar what can you tell them about the brand?
Looms for Lupus raises awareness, supports and empowers not only those living with lupus, overlapping conditions including mental health but their families and caregivers as well, in English and Spanish.
We provide the tools needed to continue to thrive despite living with these chronic conditions. We provide workshops and symposium focusing on healthcare literacy, mental health support, art therapy, lupus, fibromyalgia communities.
The psychosomatic support groups offered are bilingual, in English and Spanish and it includes a licensed clinical therapist. Art therapy, mindfulness, meditation, yoga, nutrition, knitting are incorporated in the support groups.
We also advocate for those living with these conditions by meeting with legislators, attending advocacy days in DC and requesting proclamations in local.
The live virtual symposiums in all social media platforms have allowed Looms for Lupus to provide information and support at a global level.
Looms for Lupus is part of healthcare coalitions for patient’s rights, access to healthcare and women’s care.
Where do you see things going in the next 5-10 years?
In the next 5 to 10 years, Looms for Lupus would love to offer more wellness services and support not only to lupus, fibromyalgia, mental health and overlapping conditions but for overall wellness in the community, provide and ensure that the individuals get the health and social assistance they need, track and help with better healthcare outcomes.
Pricing:
- FREE
Contact Info:
- Email: [email protected]
- Website: https://looms4lupus.org/
- Instagram: https://www.instagram.com/looms4lupus/
- Facebook: https://www.facebook.com/Looms4Lupus
- Twitter: https://twitter.com/Looms4Lupus
- Youtube: https://www.youtube.com/channel/UC9aZiZ-xL5ee2oFZiXWr5hQ
