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Denise Fixen


Author, Mentor, and Advocate

Denise Fixen

      Hello, my name is Denise 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 30 years and for most of those years an HS patient advocate for others. Prior to being bed bound, I went 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, as well as having mentored several 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 and becoming bed bound, 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 Suppurativa Unique Fun Facts - HS Connect Connect Global Support Group and co-founded the website.

I have suffered with HS for 40 plus 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.

Team Tidbit:

My passion is HS advocacy and I truly love helping others! Family and my close circle of friends are extremely important to me. I enjoy spending time with them as much as possible. I enjoy arts and crafts of any kind, but am partial to rustic country. I am a HUGE animal lover. My daughter has fur and she is my rock, my best friend and my everything! Any and all spare time (although from my bed) is spent advocating and working on our organization,

Denise has attended the following HS related events:

  • 2021 SHSA (virtual)

  • 2021 European HSF Conference

  • 2021 Pediatric Dermatology Research Alliance (PeDRA) Conference (virtual)

  • 2021 Integrative Dermatology Symposium (IDS) (in person)

  • 2021 MassBio Patient Advocacy Symposium (virtual)

  • 2021 LearnSkin HS CME Series

  • Planning committee for 2021/22 HS Patient Summit

  • Moderated Pain Management Session at HS Patient Summit

  • 2022 European HSF Conference

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