It’s #HSAwareness week. Hidradenitis Suppurativa, an auto immune condition is still relatively new. They discovered it, then just never did much about it. Research & awareness is just now increasing. . . •1 in 100 people have HS (mostly women) •Takes on average 7 yrs to get a correct diagnosis. •10% of patients report it affected their job. •HS patients are 2x as likely to complete suicide. . . Raising awareness of #HidradenitisSuppurativa is vital for promoting compassion, research, understanding, & a timely diagnosis. . . I didn’t know i had HS until the time of my coma. My immune system was compromised & i started getting boils rapidly. I had boils before but wasn’t aware it was a condition. I thought my pants broke me out, or something. I had a few boils in high school & a couple in my work life. I was constantly ashamed, & embarrassed. One time someone at work found out & started saying i had a contagious disease, my job even sent me home, It was embarrassing AF. The condition can be super shameful, & hard to manage, especially with knarley boils in rudely intrusive places. The boils, the care, the chronic fatigue, all of the scars.. it can be very overwhelming & a lot to deal with. Somedays i can’t move & that gets me down. Managing has gotten easier with people knowing, accepting, & helping. . . I found support groups & articles like this one: https://spokesman-recorder.com/2019/03/21/hidradenitis-suppurativa-hard-to-pronounce-hard-to-live-with-and-hard-to-treat/ that help. . . #HS is not: •the fault of the person who has it. •transmitted sexually. •caused by poor personal hygiene. •it is also not contagious. . . For the longest, i mentioned these boils to my doctors & was shrugged off for being big. Most primaries don’t know about this condition. Hence why it’s often misdiagnosed as staph, acne, etc. . . Bc of my #HeartFailure, i can’t take the #Humira & shouldn’t stay on antibiotics (resistance) so I’m qualified to be in a study at #USC & hoping to get a call soon. I’m glad to be a part of finding a solution for unique cases. Hopefully we can find a treatment. . . You can find support through hashtags & online meetings at HopeForHS.org (at Planet Earth) https://www.instagram.com/p/CP_5mmcJRAu/?utm_medium=tumblr
