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Beitrittsdatum: 28. Nov. 2020
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Hello, my name is Denise Panter-Fixsen HS Connect Co-Founder Long Time HS Sufferer & HS Advocate


My Bio/Journey


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 most of those years an HS patient advocate for others. I went to doctors appointments with them, surgeries, ER visits, helped them navigate insurance issues, and get them 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 and continue to work with researchers, scientists, and HS specialists, and other advocates. 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 research studies regarding hidradenitis suppurativa and the comorbidities. HS facts and true factual awareness is VERY important to me.


Due to other illnesses part of 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, video, phone, and one of the main reasons why I created this FaceBook support group. And co-founder of HS Connect.


I have suffered with hidradenitis for 42 years now, it started when I was 8 years old. I've been dealing with severe stage 3, since about age 25. For about 21 years of my life, 87% of my body has been touched by hidradenitis. Very debilitating. I have been through everything imaginable with this, including all the mistakes that go along with it. 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. HSconnect.org


Connecting the Hidradenitis Suppurativa Community with Resources, Support & Solutions.


Abzeichen
  • HS Connect CoFounder