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.
"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.
Related Articles and Videos
- The New York Times: Patient Advocates Help Navigate Healthcare
- HBO: Patient Advocates Can Help Save You Money and Your Life
- HS Connect Awareness Video: "We are HS Warriors"!
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