The Patient is In

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Summary

In her over 40 years suffering from Hidradenitis Suppurativa, or HS, a debilitating, chronic, complex inflammatory illness, Denise Fixsen has learned a lot about how to speak to doctors and advocate for her own health and the health of others.

Through diligent study of HS, which causes extremely painful recurring abscesses and lesions that can develop anywhere hair follicles are found, Denise found her voice as a patient advocate. She has worked with hundreds of HS sufferers, accompanying them to doctor's appointments and helping them make sense of their condition, find proper treatment and navigate insurance hurdles.

Denise, a co-founder of HS Connect, which provides information and resources on HS, sees patient advocacy as the calling of her lifetime. The wisdom she has collected over the years is something that can benefit anyone navigating chronic illness. Here she shares her story and her tips.

Show Notes

More from Denise Fixsen

"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 support group Hidradenitis Suppurativa Unique Fun Facts and the organization, HS Connect.
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."

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Music for The Patient Is In courtesy of Blue Dot Sessions.

What is The Patient is In?

In "The Patient is In,” the StuffThatWorks podcast, community members recount their personal stories about dealing with chronic illness and disease, and share how a mix of strength, courage and science helped them through.

Hear stories showcasing what’s possible when people are empowered to advocate for their own health, or the health of their loved ones.