10:08 PM — (Katrina + Hidradenitis) Victims If you or someone you know suffers from hidradenitis suppurativa (HS) and was affected by hurricane Katrina, an online group has started a contact list so you can let friends/family know if you are safe and your whereabouts. If you haven't noticed either of my two posts this year on HS, it's a potentially debilitating skin disease affecting a small portion of the population, and therefore little research is being done on a cure or treatments. You know those stories you hear on CNN about people being physically unable to leave their houses due to things like needing kidney dialysis or oxygen tanks? Well there may just have been one person unable to leave her home because of the grapefruit sized sores on her thighs, chest, and arpits that make any motion blindingly painful. And yet, it's extremely difficult for these individuals to get disability payments.

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I kept hunting in my archives for an essay I wrote about what it's like to have HS, and then realized I hadn't posted it when I wrote it, but just saved it on my computer, b/c I feared it was too morbid. I'm going to have to read over it again and see if I'm willing to put it up.  ¶ permalink | 0 musings