00:02can you explain what you do because i don't know how to pronounce the disease and condition
00:08and i would like you to teach all of us right now how to say it yeah of course so
00:12um i am a
00:14non-profit working i'm a non-profit founder and my non-profit works with people living with a
00:20complex skin disease called hydrogenated superativa or hs and so it creates boil-like abscesses any
00:27place on the body that there's a hair follicle so the only place you can't get it is the red
00:31part of
00:32your lips the soles of your feet or the palms of your hands but it impacts one in a hundred
00:37people
00:37in the united states so it is not a rare condition and it's very debilitating and it has many different
00:44stages but um it's a disease that i'm building awareness about because i've been living with
00:49it since i was 13 and i'm 32 right now wow for it to not be a rare disease and
00:54this is the first time
00:54that i'm ever hearing about it is truly not okay
00:57yeah
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