Hidradenitis Suppurativa
We now have a grading system. We have treatments, and we are working toward reducing stigma. The future is bright - Shannon Sweeney
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,…
Resources
My Gold Lining: A Documentary on Hidradenitis Suppurativa
My Gold Lining (MGL), is a medical documentary delving into the lives of two African-American women battling a debilitating skin condition called Hidradenitis Suppurativa (HS).
Highlighting HS
Something quite remarkable happened recently, something that will have lasting consequences for the HS community.
My Gold Lining: A story about a patient's ongoing fight to survive
HS affected every aspect of my life including my relationships with my family, friends and peers
A Relief To Finally Have A Diagnosis
Formerly known as acne inverse, Hidradenitis Suppurativa (HS) is a chronic skin condition that affects the hair follicles and sweat glands of the body. It manifests as painful puss-filled swellings in areas like the underarms, groin, inner thighs, and buttocks. If left unattended, they can grow deep into the skin making it hard to handle the physical symptoms.
Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease
HS is a relatively common and extremely burdensome inflammatory skin condition that is not well-recognised outside of dermatology clinics; yet, the clinical presentation is distinct and awareness of common risk factors, possible comorbid conditions and patient-reported quality of life can enable a reliable diagnosis. With a prevalence of 1–4%, HS is not a rare disease.
Hidradenitis Suppurativa: Current Understanding of Pathogenic Mechanisms and Suggestion for Treatment Algorithm
Hidradenitis suppurativa is one of the most distressing dermatological conditions and has a significant negative impact on patients' quality of life. However, the exact pathogenic mechanisms remain incompletely understood and—therefore—efficient therapies are still lacking.
Hidradenitis Suppurativa: Inside and Out
Hidradenitis suppurativa is a chronic, disabling, suppurative disease characterized by deep tender subcutaneous nodules; complicated by fibrosis and extensive sinuses affecting primarily the apocrine gland bearing areas. It affects all races in early 20s with greater prevalence seen in women (3 to 5:1).
Understanding Hidradenitis Suppurativa Causes
There are various potential hidradenitis suppurativa (H.S.) causes to be aware of, because there isn’t just one single factor that fuels the development of the skin condition. Researchers still have a lot of questions about why H.S. occurs in certain people, including how its root causes can help experts better understand hidradenitis suppurativa treatment options.
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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