Voices Across America

More than one diagnosis at a time – Looms4Lupus

Estela Mata-Carcamo

State: California
Congressional District: CA32


Bone / Muscle Disease, Chronic Pain, Immune Disease, Mental Health

Issues and Challenges

Estela Mata-Carcamo has encountered: Access to Expert Providers, Access to Medicine, Invisible Illness

My Story

My name is Estela Mata, I am 47 years old and I am a healthcare advocate, caregiver advocate and live with Fibromyalgia. Supporting my loved ones like my sister who lives with Lupus, my daughter who has been living with Fibromyalgia since she was 13 and so many others living with chronic \autoimmune illnesses has inspired me to share my story and to continue to advocate for those living with the Lupus, Fibromyalgia, and overlapping conditions including mental health their loved ones and caregivers. Living with a chronic and or autoimmune conditions affects us not only physically but also mentally.

Pain is something I have learned to live with from a young age however the pain was at times tolerable therefore I did not go to the doctor. Approximately 5 years ago I started feeling a lot more fatigue, migraines, pain on my chest, shoulders, legs, ankles, neck, all over my body. There were times when it was so difficult to do my daily chores, drive, even put my clothes on. I still got up, went to work and did what I could to continue to pull through. After countless visits with diagnosis varying from myofascial pain to joint pain, I finally was diagnosed with Fibromyalgia syndrome.

Even though I have my diagnosis of fibromyalgia, nothing really has changed, I wish I could tell you that one of the medications for Fibromyalgia has helped or that I am in remission, however that is not the case. A lot of the treatments have more severe side effects that I prefer to not take. I am lucky to have an amazing insurance that covers acupuncture and that I am able to afford paying for cupping and massages that will help me relieve some pain, but that is not the case for others.

I wish there was more knowledge about fibromyalgia, more funding for research. The fibro fog is real, I forget things, I lose my train of thought. I have sleepless nights, have pain all over my body, my neck, literally from the tip of my toes to the tip of my hair. I am super sensitive on my scalp and getting my hair cut or touched is super painful. I have also noticed that the sun drains me, I break out in rash and my joints swell and are painful.
Living with any condition can be difficult and life changing and impact not just the person living with the condition, their loved ones and families but the community as a whole. I will continue to work alongside my sister Juana to raise awareness, empower others to advocate for themselves and their loved ones, support them via support groups, and provide different modalities that they can utilize for their overall wellness (i.e., mindfulness, art therapy, knitting, meditation, yoga, etc.) via Looms for Lupus both in English and Spanish.

Looms for Lupus is a non-profit corporation providing resources and awareness to minority families and those affected by Lupus, Fibromyalgia, Mental health and other overlapping conditions. Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Our aim is to create an environment to reassert a sense of hope during their time of illness and to empower the individual to take charge of their life through a chronic and often life-threatening illness.

For over a decade I have had the privilege of meeting so many amazing people, working\collaborating with many local, national, international and global organizations. However, being able to Advocate in DC with my daughters and my sister and making a difference by sharing our stories with legislators by far has been one of the most memorable and proud moments.

Even though we have been raising awareness, meeting with legislators and working at a grassroot level in our communities, there is still much more that needs to be done. There is much more awareness needed for Fibromyalgia, Lupus, and mental health all which are invisible illnesses that need more awareness and funding. Lupus is more common in minority communities, approximately 30% of people living with lupus also have fibromyalgia; even though, women have a higher rate of these conditions men and children can get them too. These conditions can be overwhelming, sometimes the mental and emotional effects of lupus and fibromyalgia can be related to the disease itself or the medications.

I will continue to support, empower, raise awareness, advocate for more funding, and amplify the patients voice to ensure that everyone has knowledge about lupus, fibromyalgia, and mental health via symposiums, podcasts, support groups, social media.. These three invisible illnesses need to be acknowledged. The impact these illnesses have in minority communities impact our country as a whole. I will continue to provide support, empowering resources, and healthcare literacy, as well as continue to advocate for healthcare access and health equity.

My Motivation and Inspiration

My parents raised me to give back and support others. Seeing my loved ones and so many live with invisible illnesses such as Lupus, fibromyalgia, overlapping conditions such as mental health and being diagnosed myself with Fibromyalgia have motivated me to continue to support, empower, provide resources, healthcare literacy and advocate for more funding and research. I want to continue to motivate others and inspire them to also utilize their voice, to know they are not alone and to amplify their voice to ensure they get the healthcare access they need.

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