Hidradenitis Suppurativa

We now have a grading system. We have treatments, and we are working toward reducing stigma. The future is bright - Shannon Sweeney

Hidradenitis Suppurativa
Hidradenitis Suppurativa

image by: Hope for HS

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Stigma and Shame: How It Has Affected My Life

HS is NOT rare.
HS is rarely diagnosed (thankfully, this is changing).
HS is rarely diagnosed properly (this too is getting better).

Hidradenitis Suppurativa is not a disease that all doctors encounter, but the disease itself is not rare.

Hidradenitis Suppurativa is a global disease affecting millions of people. It was once thought to be a rare disease, however, it is widely accepted* that HS affects an estimated 4% of the global population (based on reported cases).

There are millions of people, just like us, living with HS. These percentages and numbers do not include unreported, wrongly reported (this does happen), misdiagnosed cases,…

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Resources

 Stigma and Shame: How It Has Affected My Life

Almost four years ago, I was diagnosed with Hidradenitis Suppurativa, a chronic inflammatory skin condition that affects the hair follicles. Living with this skin condition was complicated because it is rarely diagnosed and discussed, making me feel like an outsider looking in.

 We are Not a Rare Breed

Hidradenitis Suppurativa is not a disease that all doctors encounter, but the disease itself is not rare.

5 Things Not to Say to Someone with Hidradenitis Suppurativa

I thought I would share with you, some things that people have said to me about my hidradenitis suppurativa – it may make you smile, or roll your eyes, or you may think yes I’ve been there too!

HS Connect

To connect those who suffer from Hidradenitis Suppurativa with solutions, support, resources, suggestions, and helpful information for all dealing with this illness. Our mission is to further HS awareness and the study of HS, as well as inform the HS community of available studies, and to rid colleges and universities of outdated and antiquated HS training materials and to better educate medical residents and gain more interest in the HS field.

No BS About HS

When it comes to hidradenitis suppurativa (HS), there’s a lot of BS, from body shaming to being silent, it’s time to take that BS down. So ask questions, share answers, and together, we can get closer to the truths of HS.

Barry's HS Blog

On living with hidradenitis suppurativa (HS).

HidraWear

HidraWear is the easy wound care solution for people with HS

Hope for HS

We are a 100% volunteer, grass-roots, patient and caregiver directed non-profit organization, supporting and advocating for HS patients since 2013.

HS Foundation

People living with Hidradenitis Suppurativa are at the heart of our mission, which is to improve the lives of people affected by HS through advocacy, education, and research. Our vision is to live in a world where no one suffers from HS.

HS Online

HS Online is a unique resource developed in collaboration with leading doctors in the field and people living with hidradenitis suppurativa, also known as HS. HS Online is designed to help educate, uplift and empower the HS community with trusted information and support...

HSDisease.com

At HSDisease.com we provide patients and caregivers with a platform to learn, educate, and connect with peers and healthcare professionals.

Canadian Hidradenitis Suppurativa Foundation

Helping Canadian dermatologists better manage HS...

European Hidradenitis Suppurativa Foundation e.V.

Here you can find information about our history, goals, statutes, publications, our committees and general assemblies, founding und supporting members and information how to become a member of the EHSF.

GARD

In most cases, the cause of HS is unknown. Genetics, environment, and hormonal factors may play a role.

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