Session Type: Patient Perspectives
Session Time: 12:00PM-1:00PM
Background/Purpose: Juana was Diagnosed with Rheumatoid Arthritis in April 2009. In May 2009 she ended up in the hospital with a variety of symptoms and was sent home with a diagnosis of Anxiety because she insisted that something was wrong. She refused to go home unless she had testing done, after the testing was completed, She was admitted to ICU with platelet count of 2,000 (normal is 150,000-450,000), she was diagnosed with Thrombocytopenia and Lupus SLE. If she would have gone home that day she would have died. She was scared and knew very little about Lupus, she wanted to learn, and empower others about self advocacy.
Learning about Lupus, treatments, tracking symptoms and becoming a better self advocate while working together with her care team was something that Juana and her support system had to do. Loom knitting was a great way for Juana to relieve her stress and every weekend all her family would gather to learn, support and loom knit together. Supporting each other and learning more about Lupus helped Juana and her family. Loom knitting had given Juana a stress relieving technique, it helped her fight depression and together with her family, they were knitting hope.
In 2011 the Mata Sisters co-founded Looms for Lupus, non profit organization that provides support, resources and awareness to minority families, those living with Lupus, overlapping conditions and their caregivers\loved ones. Juana and Estela, (caregiver\loved one) facilitate in person support group in Baldwin Park, CA and a virtual Facebook live Spanish Support Group every second Saturday of the month, where they include Art therapy such as loom knitting, painting, rock art, vision boards, other forms of art therapy and wellness techniques such as yoga, mindfulness and meditation. Living with an autoimmune and chronic condition can be hard not only physically but mentally, incorporating these modalities help in the overall health; Mental Health is as important as Physical Health.
Quality of Life:
Juana and Estela are patients, advocates; together they support, empower, and educate others, helping others helps them. Educating others on different modalities to relief stress can help prevent flares and also help with their quality of life.
Empowering and supporting the caregivers by providing them with education and tools to be supportive and to also practice self care is essential for both the caregiver and the patient.
Empowering the patient on how to advocate for themselves and providing tools and resources to track their symptoms, prepare for their visits and work closely with their provider helps both the patient and the care team provide better treatments and have better patient outcomes. Educating them on insurance plans/authorizations and Maintaining copies of their medical record helps them keep track and be proactive with their care.
Art Therapy- incorporating Art Therapy can alleviate symptoms of depression, reduce stress, improve self esteem and improve mental health.
Social Media Platforms- Provide support\educate and connect via Twitter, Instagram and Facebook in English and Spanish. This helps bring up to date information and connect with others and ensure they are not alone.
Disclosure: J. Mata, None; M. Mata-Carcamo, None.
To cite this abstract in AMA style:Mata J, Mata-Carcamo M. “Knitting a Community of Hope”- Supporting, Empowering and Educating Those Living with Lupus, and Overlapping Conditions and Their Loved Ones via in Person and Virtual Support Groups That Include Art Therapy, and Wellness Techniques Is Key; Mental Health Is as Important as Physical Health [abstract]. Arthritis Rheumatol. 2020; 72 (suppl 10). https://acrabstracts.org/abstract/knitting-a-community-of-hope-supporting-empowering-and-educating-those-living-with-lupus-and-overlapping-conditions-and-their-loved-ones-via-in-person-and-virtual-support-groups-t/. Accessed October 28, 2020.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/knitting-a-community-of-hope-supporting-empowering-and-educating-those-living-with-lupus-and-overlapping-conditions-and-their-loved-ones-via-in-person-and-virtual-support-groups-t/