If you wish to speak with people who have HS please go to the public facebook group which exists to promote public awareness about the disease and to teach.
Also if you would like my story and to speak with me personally my blog with extremely graphic images is here tjkorri.blogspot.com
My email is firstname.lastname@example.org oh and my name is Teri. I will send you an email with more information and details as to ongoing projects to spread awareness and correct information about HS. thanks for your willingness to learn more.