In this episode, we are joined by Estela Mata, President and CEO of Looms for Lupus, a non-profit dedicated to raising awareness and providing support for those living with lupus, and other chronic conditions. Estela shares her personal and family journey with lupus and the profound impact of advocacy. She highlights the importance of community, the need for increased awareness, and the power of sharing personal stories, especially within the Hispanic community. Estela’s message of hope and resilience is a reminder of the strength found in community and the critical role of advocacy in chronic illness management.

Among the highlights in this episode:

01:13: Estela shares the personal story of her sister Juana’s battle with lupus, including the challenges of diagnosis and the importance of persistence in seeking medical care

02:46: Zoe Rothblatt, Director of Community Outreach at GHLF, and Estela, discuss the critical role of advocacy in chronic illness, with Estela explaining how she and her family became advocates to support others facing similar struggles

04:01: Estela reflects on the powerful connections formed through advocacy, emphasizing how community support can provide strength and hope

05:56: Estela recounts the origins of Looms for Lupus, explaining how it was founded by her and her sisters to provide support, education, and advocacy for those affected by lupus and other chronic conditions

07:07: Estela discusses her involvement in clinical trials, highlighting the importance of being informed and the role of clinical trials in offering hope for new treatment options

08:52: Zoe and Estela discuss the therapeutic value of creative activities like loom knitting and crocheting, particularly as coping mechanisms during challenging times

10:44: Estela talks about expanding Looms for Lupus to support individuals with other chronic conditions, emphasizing the importance of overall awareness and education

11:35: Estela shares insights on the health disparities faced by the Hispanic community and the critical need for culturally competent care and early diagnosis

13:10: Estela discusses the impact of advocacy within the Hispanic community and highlights the importance of using one's voice to demand equitable health care and reduce stigma

16:59: Estela concludes by encouraging listeners to get involved in advocacy, sharing her sister's empowering slogan: “Never give in, never give up, never let go. Just keep fighting”

20:10: What our hosts learned from this episode

If you want to subscribe to our email newsletter to learn more about clinical trials, especially for lupus patients, please send your contact information via this form: https://bit.ly/LupusHelpCenter

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.