Description
THIS EVENT HAS BEEN SPONSORED BY THE HIDRADENITIS SUPPURATIVA FOUNDATION,THE MAMA AU, HIDRAWEAR, AND FORHER COSMETICS.
Purpose: To raise awareness about Hidradenitis Suppurativa (HS) and provide patients and caregivers tools to manage the condition.
Agenda: Each day we will host a free hour-long virtual session exploring various topics related to HS. This will include yoga, mindfulness (mental health), alternative medicine, traditional medicine, sound bathing, trauma management, community activation/organization, and storytelling. Each day's activities are listed in detail below.
Cost: Free [We are accepting donations here. Money raised will be donated to the HS Foundation, Hope for HS, and the broad screenings and programming of the My Gold Lining documentary film.]
Session Breakdown + Times:
June 1: Exploring trauma + yoga w/ Julie Fernandez
SESSION TIME: 12 PM to 1 PM PST
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Julie is a yoga instructor and trauma coach living with Hidradenitis Suppurativa. Julie has created a yoga practice specifically for HS patients who traditionally have a short range of motion due to pain, open wounds, and other limitations.
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This session is specially crafted to address the mental health treatment disparity within the community and provide patients with tools to empower and heal themselves over time. In addition to the yoga session, Julie will speak to how trauma impacts the body.
June 2: Exploring Mental Health + Sex w. Dr. Erin Martinez
SESSION TIME: 10 AM to 11 AM PST
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Dr. Martinez is a social worker who works intimately with HS patients to uncover the medical traumas endured throughout the course of patients' diagnosis, treatment, and management. She's specifically spoken on sex, relationships, and chronic illness.
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This session is to help HS patients to understand how HS affects mental and emotional health.
June 3: Exploring genetics and allopathic medicine w. Dr. Raja Sivamani
SESSION TIME: 5 PM to 6 PM PST
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Dr. Raja Sivamani has a unique mix of expertise for patients who are looking to gain a better understanding of their HS and how alternative and complementary approaches can be integrated into the management of their condition. He is trained in Ayurveda and allopathic medicine.
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The goal of this session is to provide patients and caregivers with an understanding of how HS is impacted by genes, gut health, diet, and the environment.
June 4: Understanding Your Diagnosis w. Dr. Iltefat Hamzavi
SESSION TIME: 2 PM to 3 PM PST
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Dr. Hamzavi is a dermatologist specializing in the treatment of HS through the Hidradenitis Suppurativa clinic in Henry Ford Hospital. He also owns Hamzavi Dermatology, a private practice with locations across Michigan. In addition to this work, he's also to the president of the HS Foundation.
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The goal of this session is to provide patients with in-depth knowledge on the treatment and management of HS within traditional medicine. More specifically, this session will cover surgical options, clinical trials, and biologics.
June 5: Exploring community organization + support groups w/ Angela Miller
SESSION TIME: 7 AM to 8 AM PST
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Angela Miller is the President and Founding Director of Hope for HS and the National Coordinator of Advocacy and Support for the HS Foundation. Hope for HS was founded in 2013 by Miller and Dr. Melissa Williams. The organization is the 1st face to face support group in the United States for those with HS, their caregivers, and their loved ones.
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The goal of this session is to uncover the benefits of community organization and understand how it's another tool for healing from and managing HS. At the end of this session patients will also have a list of online support groups they can join.
June 6: Healing Trauma Through Sound Bathing w. Supercoolwicked
SESSION TIME: 3 PM to 4 PM PST
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Supercoolwicked, also known as Morgan Hutson, is a multidisciplinary artist who will facilitate a sound bath where patients are introduced to healing mental and emotional trauma through sound frequencies, meditation, and affirmations.
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The goal of this session is to provide patients with another tool to heal from the mental and emotional effects of HS. At the end of the session, it's our goal to encourage patients to incorporate this healing modality into their everyday lives.
June 7: Share your story moderated by Jasmine "IVANNA" Espy
SESSION TIME: 12 PM to 1 PM PST
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Jasmine "IVANNA" Espy is the director and producer of the first documentary on HS showcasing the patient's perspective called My Gold Lining: A Documentary on Hidradenitis Suppurativa. The film seeks to shine a light on the HS patient's perspective with additional research from dermatologists, naturopathic physicians, and therapists.
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The goal of this session is to encourage patients to embrace and tell their personal experiences with HS. Essentially, two patients will have the opportunity to share their success stories in management, remission, and treatment.
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Register for this session here.
FAQs
Are there ID or minimum age requirements to enter the event?
No, the event is for all ages.
How can I contact the organizer with any questions?
Please email: MyGoldLiningDoc@gmail.com
Does the event cost?
No, but we are accepting donations here.
Can I register for more than one session/ ticket?
Yes, each session is scheduled for various dates and times throughout HS Awareness Week. Further details can be found in the description above.
How do I join the virtual session?
We will email a Zoom webinar link a few days before the session. Please make sure a valid email address is entered upon registration.