S8, Ep 7- Finding Strength and Support: Brindley Brooks on Living with Hidradenitis Suppurativa (HS)

In this episode of The Health Advocates, our hosts welcome Brindley Brooks, founder and executive director of HS Connect. Brindley shares her powerful journey living with Hidradenitis Suppurativa (HS) since age 10, including her misdiagnosis, the stigma surrounding HS, and how her life-changing decision to undergo surgery led her to become a passionate patient advocate. The conversation highlights the critical role of advocacy in supporting the HS community, including initiatives like GHLF's HS Patient Guide and the impactful work of HS Connect in raising awareness, providing education, and fostering a supportive community for those living with HS. Among the highlights in this episode: 01:23: Brindley introduces herself and shares HS Connect’s mission of providing factual education and promoting shared decision-making 01:53: Brindley recounts her early experience with HS, initial misdiagnosis, and the stigma that discouraged her from seeking care for over a decade 03:57: Brindley describes the pivotal decision to undergo surgery, the transformative impact it had on her life, and finding empowerment through that choice 06:12: Brindley discusses the founding of HS Connect, its rapid growth, and the organization’s focus on correcting misconceptions and reducing stigma in the HS community 08:18: Steven Newmark, Chief of Policy at GHLF, talks about GHLF’s HS Patient Guide and highlights Brindley’s role in incorporating patient perspectives into the resource 08:36: Brindley shares why patient-involved educational resources are essential for HS patients and her experience collaborating with GHLF 09:37: Brindley explains the different levels of advocacy, from sharing personal stories to influencing federal policies, including a campaign for insurance coverage of laser hair removal for HS patients 10:46: Steven emphasizes the importance of collaboration between organizations like GHLF and HS Connect in advancing advocacy 11:26: Brindley outlines HS Connect’s 2025 priorities, including mental health initiatives like "Healing Space for HS" and broader advocacy campaigns 12:58: Brindley offers words of encouragement, urging those with HS to seek community support and to know they are not alone To learn more about HS and access GHLF’s HS Patient Guide, visit: https://ghlf.org/hspatientguide/ Contact Our Hosts Steven Newmark, Chief of Policy at GHLF: [email protected] Zoe Rothblatt, Director of Community Outreach at GHLF: [email protected] A podcast episode produced by Ben Blanc, 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 [email protected] Catch up on all our episodes on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.