Hello, my name is Denise Panter-Fixsen and I am a long time HS sufferer & advocate. Welcome and very nice to meet you. You're not alone!
I have dedicated my life to HS and to helping others who suffer. I have been an HS advocate for 29 years now and for 28 of those years an HS patient advocate for others. I have been to doctors appointments, surgeries, and ER visits with them and helped them navigate insurance issues, get proper 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 illness above and beyond research.
I have worked with and continue to work with researchers, scientists, HS specialists, and other advocates. I 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 and still do spend countless hours researching up-to-date published medical research studies regarding hidradenitis suppurativa and comorbidities. HS facts and factual awareness is VERY important to me.
Due to other illnesses part of my HS advocate journey came to a halt, at least the physical aspect of it. I continue to be an HS advocate and I do what I can to help other sufferers; it’s now just done via email, online, video, phone, and is one of the main reasons why I created the HS FaceBook support group Hidradenitis Suppurativea Unique Fun Facts - HS Connect Connect Global Support Group and co-founder/partner on the HSconnect.org website.
I have suffered with HS for 42 years now, it started when I was 8 years old. I've been dealing with severe stage 3, since age 25. For about 21 years of my life, 87% of my body has been touched by hidradenitis. I have been through everything imaginable with this, including all the mistakes that go along with this illness. I have also 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 as well as the mental and emotional toll this can take on you. Please feel free to ask me any questions about anything HS related or my personal HS case.