I Have Hidradenitis Suppurativa
About 3 years ago I was misdiagnosed and mistreated. I have had 11 surgeries in the course of 15 months to remove these painful boil like lumps that continue to come back. I have lost count how many times they were lanced and drained. The Dr's & surgeons don’t know how to treat this condition due to lack of knowledge and research. I joined this site in hopes to find supporters and others with the same condition or if you know someone like me. It has changed my life drastically! I have been denied disability and I am currently fighting for benefits as I do not have insurance and cannot work due to my condition. I am scheduled to see a plastic surgeon this Tue to discuss skin graphing after surgery. They call this one a “radical” surgery and still cannot guarantee results. I am very skeptical and very scared!! No antibiotic has helped and I am always looked at like a junky from these Dr's and surgeons when I tell them how painful it is to live with. It has been a vicious cycle with these Dr's that I constantly have to correct on my condition. They do not know!!! I have in frustration posted signs up all over the downtown area where all of my 11 surgeries have been performed. One surgeon says he was "doing me favors" by operating on me and another surgeon told me that they have been more than "generous" with prescribing me pain meds!! I am sick and tired and frustrated!! I started a face book page just for my condition and my goal is to raise awareness n get the health care professions on the same page. You can look me up on Facebook under the same name HS PATIENT. Please join and support me through this fight. I will NOT stop until us sufferers are heard! Someone has to step up and be willing to take this on and do the appropriate research to get closer to the cure. We are hoping to hold a fundraiser fair in the next few months and I already have a few local supporters. I am looking for volunteers to help with this event as well.
I would like to thank you all in advance for your support. I wish this condition upon NO ONE!
Please feel free to email me any questions
hspatient503@yahoo.com