Denise Panter Fixsen
You're not alone! I have dedicated my life to this HS and to helping others who suffer. I have been an HS advocate for 28 years now and for 25 years of those years I was an HS patient advocate for others and went to doctors appointments with them, surgeries, ER visits, helped them get on treatments etc. I have met, helped and worked with hundreds of HS sufferers. Not only has it been an honor working with so many fabulous warriors, but this entire journey has taught me so much about this disease above and beyond research.
I have also worked with researchers, scientists, and HS specialists and have attended several HS medical conferences and seminars. I have enjoyed putting together several successful face-to-face support groups around the United States and have spent and still spend countless hours researching up-to-date medical published studies regarding this disease. I am still in touch with several of my past contacts who continue work diligently with HS. HS facts and true factual awareness is very important to me.
Due to other illnesses my HS advocate journey came to a halt, the physical aspect of it anyway. I continue to be an HS advocate and I still do what I can to help other sufferers; it’s just now done via email, online, phone, and one of the main reasons why I created the FaceBook support group.
I have suffered with hidradenitis for almost 41 years now, it started when I was 8 years old. I've been dealing with severe stage 3, since age 25. For about 20 years of my life, 87% of my body has been touched by hidradenitis. I have been through everything imaginable with this disease including all the mistakes that go along with it. I have had several invasive wide excision surgeries, which I am still undergoing to date.
I am an open book when it comes to my HS and I understand your pain 100%. Please feel free to ask me any questions about anything HS related or my personal HS case. I also have several pictures of my HS, to include all my surgeries, for awareness and educational purposes.