LearnSkin

Episode 132: Hidradenitis Suppurativa Patient Perspective: Tips for Whole Person Care

profile-imageBrindley Brooks

Episode description

Looking for better ways to work with your HS patients? We've got them right here. This week, we're joined by Brindley Brooks, founder of HS Connect, as she offers her own experience with HS, debunks one-size-fits-all myths of dieting and clothing, and provides tips on working with HS patients.

After not telling anyone about her HS diagnosis for 27+ years, Brindley Brooks started her HS surgery journey and founded HS Connect. Her passion is to help everyone find their voice and not carry the shame and stigma alone that comes with this diagnosis.

HS Connect is a patient-led non-profit organization committed to connecting Hidradenitis Suppurativa patients, families, and the medical community with resources, support, and solutions, including HS support groups.

To learn more about HS, attend the integrative panel with Brindley Brooks at the 2022 Integrative Dermatology Symposium.

Each Thursday, join Dr. Raja and Dr. Hadar, board-certified dermatologists, as they share the latest evidence-based research in integrative dermatology. For access to CE/CME courses, become a member at LearnSkin.com.

People in this episode

User: Brindley Brooks
guest

Brindley Brooks  

Armpit envy; it’s something I’m sure most have not experienced, or even considered. For those with HS, this is a normal occurrence. Being constantly aware of your clothing, drainage and odor are things that no one else takes into account on a normal day, but they are constantly running through the head of someone with HS. Wearing tank tops in summer, let alone bathing suits, strike fear in our hearts. I have tried, like most of us, almost everything to help with my HS. Some “treatments” made the situation worse and just added insult to injury. I was finally advised to see a surgeon and begrudgingly agreed. This consultation led me to the best decision I’ve ever made for myself. It has had a tremendous impact on my HS, and as a result, my entire life.

I've suffered from Hidradenitis Suppurativa (HS) for over years, beginning at the age of 10 as recurrent boil-like abscesses and I wasn’t diagnosed until 16 (like most with HS, it's typically a 7-10 year timeframe to diagnosis). I didn’t share my condition with anyone for fear of being seen as “gross” and unclean, which continued into adulthood. It wasn’t until I had wide excision surgery 5 years ago that I began telling people about my HS. 

I met Denise in an HS support group, and as a result, HS Connect (
hsconnect.org) was born. Our patient-led non-profit organization focuses on eradicating misconceptions and stigmas, spreading factual and accurate information, and providing resources for everyone who suffers, including the medical community. 

I have 2 daughters with HS, a biological daughter 15, Stage 2 and stepdaughter, age 19, Stage 1. I hope to help eliminate the shame that HS patients face and move HS in the right direction with the help of HS Connect as a patient, parent, and advocate.

User: Hadar Lev-Tov
host

Hadar Lev-Tov  

MD MAS

Dr. Hadar Lev-Tov is a board-certified dermatologist with extensive research experience. Throughout his training and in daily practice, he has always believed that the key to achieving health for his patients is grounded in his ability to truly connect to their experiences and perceptions of health and well-being. Maimonides, one of the greatest philosophers of all time realized that human knowledge, often represented as "science," is limited. As a physician, he feels he would be a fool to believe all is known. Maimonides said, "The physician should not treat the disease but the patient who is suffering from it." LearnSkin is his journey to a better understanding of his patients.

User: Raja Sivamani
host

Raja Sivamani  

MD MS AP

Dr. Raja Sivamani is a board-certified dermatologist and practices as an integrative dermatologist at Pacific Skin Institute. He is an Adjunct Associate Professor of Clinical Dermatology at the University of California, Davis and Director of Clinical Research and the Clinical Trials Unit.He is also an Adjunct Assistant Professor in the Department of Biological Sciences at the California State University, Sacramento and an Associate Professor of Dermatology at California Northstate University, College of Medicine.He engages in clinical practice as well as both clinical and translational research that integrates bioengineering, nutrition, cosmetics, and skin biology. With training in both Allopathic and Ayurvedic medicine, he takes an integrative approach to his patients and in his research.He has published over 100 peer-reviewed research manuscripts, 10 textbook chapters, and a textbook entitled Cosmeceuticals and Active Cosmetics, 3rd Edition with a passion for expanding the evidence and boundaries of integrative medicine for skin care.

About Podcast

Welcome to the Learn Skin podcast with your hosts, board certified dermatologists, Dr. Raja Sivamani and Dr. Hadar Lev-Tov. Each week, we will be bringing you the latest in Integrative Dermatology. Send us your questions, comments, and suggestions by email to [email protected] and you may be featured in a future episode.

Hosts:  Hadar Lev-Tov, MD MAS & Raja Sivamani, MD MS AP
Audio Engineer: Vin Chandra
Editor: Jake Zawlacki

Disclaimer

This podcast is meant for educational and informational purposes only. Neither this podcast nor any information contained within it are a substitute for professional care by a doctor or other qualified medical professional. This podcast does not constitute medical or other professional advice or services. If you have a medical concern, please consult with your physician. This podcast is available for private, non-commercial use only. Advertising which is incorporated into, placed in association with, or targeted towards the content of this podcast is forbidden. You may not edit, modify, or redistribute this podcast. LearnSkin assumes no liability for any of your activities in connection with this podcast or for your use of this podcast in connection with your website, computer, or playing device.

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