Hidradenitis Suppurativa (HS) is a skin condition. HS is a chronic disease. HS is caused by the immune system. HS causes systemic inflammation. HS is both visible and invisible. HS is painful. HS is all of these things!
HS is a skin condition but it is more than just the skin. HS causes cysts or abscesses to form and reoccur on top of and just below the skin. These cysts can become highly inflamed, itchy, and painful. They can also drain fluid before healing or may drain below the skin, creating tunnels or sinus tracts. These cysts cause scarring on the skin. HS is also autoinflammatory, which means that the immune system creates too much inflammation in the body, which causes other body systems to go into hyperdrive. This is why HS is a serious chronic illness that can cause other symptoms, such as fatigue, fever, and muscle aches.
How do medical professionals define HS?
The American Academy of Dermatology Association says that HS is “a little-known disease that causes deep and painful lumps under the skin, usually in the armpits or groin.”
The Hidradenitis Suppurativa Clinic at the Rheumatology office with the GW Medical Faculty Associates defines HS as “a common chronic, recurrent inflammatory disease of the apocrine sweat glands. Patients with HS develop debilitating, recurrent, inflammatory nodules, sinus tracts and abscesses in the underarms, breasts, groin, and buttocks.”
The HS Foundation defines hidradenitis suppurativa as “a chronic, non-contagious, painful and quality of life impacting skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life”
What do all of these definitions have in common? HS is a chronic disease that affects the skin, causing lumps or boils, usually in the armpits, breasts, groin and buttocks.
What do these definitions disagree on? One says “little-known disease” and another says “common chronic disease” Truth is, HS is probably more common than we think, but because it is not well known, many people do not get diagnosed. It’s important to note here as well that HS does NOT always occur in the folds of the skin. It is rarer, but HS can also flare on the legs, arms, neck, back, and face.
What is KS and HS?
I started KS and HS as an instagram in February 2020. It is a place for me to share my thoughts on living with HS. It is also to raise awareness on HS, both for those who suffer from this disease but also for people who have never heard of it! If I can help just one person learn about HS, it will help us all.
KS and HS expanded from Instagram as I started to interact with more people in the chronic illness community and those who have HS. I want to share more information and lived experiences with HS. This blog will be a place for that.
Check out the resources tab for resources on HS that I like. These are some sites that I go to to learn about HS but I take what I find helpful and leave what I don’t. These and others inform the posts I share here and on Instagram.
Check out the FAQ page on HS to learn some answers to questions I get a lot. If you have any more, feel free to contact me and I’ll add more there as I get them!
Hope all is well,
Love,
Kathryn