Up until recently I knew little about the condition Hidradenitis Suppurativa (hope I spelt that right) otherwise known as HS but Peter has found two useful links to share with any HS suferrers that need that extra bit of guidance and support...
Perspective of a HS sufferer
http://ratt1962.blogspot.com/2006/02/hidradenitis-suppurativa-need-for.html
Facebook group - Hidradenitis Suppurativa Friends
http://www.facebook.com/home.php?ref=hp#!/groups/123675434400466/?id=125486554219354¬if_t=group_activity
Thanks Peter! :)
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Great info! I have suffered from HS since puberty, which of course went undiagnosed and led to a lot of shame and embarrassment for many years. When I finally received my diagnosis in my mid-twenties it was a relief, but not much of one since there is not a lot they can do to treat it. I have had moderate success with Minocycline as a preventative antibiotic, and thankfully have seen a reduction in outbreaks as I get older (I'm 38 now). I find it very interesting that I have found many other EDSers who also suffer from HS, and wonder if our collagen defect makes us more prone to HS lesions?
ReplyDeleteYes, I also know many other EDSers that suffer with HS, hmm maybe our collagen defect does make us more prone to HS lesions, definitely something I will look into further to see if I can find out anymore information :)
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