Patients Benefit from GHLF’s Launch of Interactive Guide for Hidradenitis Suppurativa
The Global Healthy Living Foundation (GHLF) has unveiled a new resource aimed at supporting those living with Hidradenitis Suppurativa (HS). The “Interactive Patient Guide to Hidradenitis Suppurativa” is designed to empower individuals by offering personalized tools and actionable advice, making it easier for patients to manage the complexities of living with HS. This innovative guide simplifies the process of understanding and managing the condition, giving patients more control over their health and well-being.
Hidradenitis Suppurativa is a skin condition characterized by painful, recurring abscesses or boils, typically in areas like the armpits, groin, buttocks, and under the breasts. It affects approximately 1 percent of the global population, which equates to an estimated 3.3 million people in the United States. However, due to frequent underdiagnosis, the true number may be much higher. It takes, on average, nearly 10 years for patients to receive an accurate diagnosis, and by the time they are diagnosed, 70 percent of individuals already have moderate-to-severe disease.
“HS can affect anyone, anywhere, at any time,” said Seth Ginsberg, Co-Founder of GHLF. “Misconceptions and delayed diagnoses often leave many patients feeling isolated and frustrated. Our goal with this guide is to provide patients with the knowledge, tools, and confidence they need to advocate for themselves and take meaningful steps toward managing their condition.”
The guide is designed to be an accessible and comprehensive resource for patients, caregivers, and advocates. It provides valuable support through several key features:
Key Features of Your Interactive Patient Guide to HS:
- Learning Modules: These offer in-depth information about HS symptoms, treatment options, and self-advocacy strategies. They are designed to help patients better understand their condition and become more proactive in their care.
- Patient Perspectives: Real-world advice from individuals living with HS offers invaluable insights into coping strategies, emotional well-being, and navigating daily challenges. This peer support element helps patients feel less isolated and more understood.
- Interactive Tools: The guide includes practical tools such as note-taking and checklists, allowing patients to reflect on their journey, track symptoms, and plan next steps with their healthcare providers.
- Support Resources: This section provides guidance on building support systems, navigating insurance, and requesting workplace or school accommodations. These resources are crucial in helping patients manage their condition in all aspects of their lives.
The development of the guide was a collaborative effort involving healthcare providers, dermatologists, and patient advocates, including Dr. Amit Garg, a leading dermatologist in HS care, and Brindley Brooks, Founder of HS Connect, an advocacy group for the HS community. The project was made possible with the support of UCB, a global biopharmaceutical company dedicated to advancing the treatment of immunologic diseases.
“We believe that knowledge is power, and this guide gives patients the tools they need to navigate their care and improve their quality of life,” said Ginsberg. “This interactive resource ensures that people living with HS have easy access to critical information that can help them manage their condition effectively.”
Jeff Stark, MD, Head of Medical Immunology, U.S. at UCB, echoed this sentiment: “In addition to our work developing new treatment options for people living with severe immunologic diseases, UCB is deeply committed to expanding support and tools that can help ease the management of diseases like hidradenitis suppurativa. We’re proud to have supported the Global Healthy Living Foundation on this interactive HS patient guide, which was created by the community, for the community to offer tools and information tailored to real patient needs.”
About Global Healthy Living Foundation
The Global Healthy Living Foundation is a U.S.-based, 501(c)(3) nonprofit organization dedicated to improving the quality of life for people with chronic illnesses. Its mission includes advocating for improved access to healthcare through education, patient-centered clinical research, support, and economic and policy research. The foundation is also an advocate for vaccines and supports patients across a variety of medical disciplines, including dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare diseases, and pulmonary care.
GHLF is the parent organization of CreakyJoints®, a global digital community for people living with arthritis and other chronic conditions. Through its advocacy work, patient-centered research, and educational resources, GHLF helps patients improve their lives by providing a platform for support, activism, and education. The foundation reaches over 700,000 patients monthly, generating more than 10 million impressions across social media platforms. GHLF also produces patient-centered audiovisual content, with more than 1 million views in 2024 alone.
The Global Healthy Living Foundation does not solicit donations from the public but receives funding from government entities, non-governmental organizations, industry partners, family foundations, and the foundation’s Co-Founder, Louis Tharp.
The release of the Interactive Patient Guide to HS marks a significant milestone in empowering individuals living with Hidradenitis Suppurativa, providing them with the knowledge, resources, and support they need to live fuller, healthier lives. By creating such comprehensive, patient-driven resources, GHLF continues to advocate for the improvement of healthcare access and quality of life for people affected by chronic illnesses.
