How to Be a Patient Advocate: Advice from an HS Patient

The Patient is In

เนื้อหาจัดทำโดย Rachel Olstein Kaplan เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดเตรียมโดย Rachel Olstein Kaplan หรือพันธมิตรแพลตฟอร์มพอดแคสต์โดยตรง หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่อธิบายไว้ที่นี่ https://th.player.fm/legal

3+ y ago 23:41

MP3•หน้าโฮมของตอน

ซีรีส์ที่ถูกเก็บถาวร ("ฟีดที่ไม่ได้ใช้งาน" status)

When? This feed was archived on September 09, 2023 20:30 (7M ago). Last successful fetch was on November 05, 2022 11:31 (1+ y ago)

Why? ฟีดที่ไม่ได้ใช้งาน status. เซิร์ฟเวอร์ของเราไม่สามารถดึงฟีดพอดคาสท์ที่ใช้งานได้สักระยะหนึ่ง

What now? You might be able to find a more up-to-date version using the search function. This series will no longer be checked for updates. If you believe this to be in error, please check if the publisher's feed link below is valid and contact support to request the feed be restored or if you have any other concerns about this.

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."

Related Articles and Videos

-----------------------

StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness.

Contribute to the HS Community on StuffThatWorks

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

32 ตอน