ANNETTE (ZÜRICH, SWITZERLAND) - WARRIOR STORY #1 | HS CONNECTING THE WORLD

Please meet Annette Rosenberg, our very first Warrior to be interviewed in Zürich, Switzerland. Annette traveled from Slovenia to share her story. __________________________________________________ A B O U T U S Welcome to our channel, and thanks for stopping by! We are Jillian and Jeremy, you might know us from our travel channel, The Adventures of Jinx and the Tiny Ninja:    / @jillianandjeremy  . See “Jeremy’s Story” below for the backstory on how /why this channel was created. WARRIOR STORIES is focused on those suffering from HS, including loved ones and caretakers. Many Warriors can feel like their HS defines them…but we’re here to tell you that is NOT the case! These videos are to show everyone that HS doesn’t define any of us and that we’ve got many passions, talents, gifts, and a level of perseverance that isn’t often seen in people. All of you HS Warriors should be extremely proud of who you are, what you’ve suffered through, and realize that WE SEE YOU!!! These videos focus on YOU, telling your Warrior Stories! #strongertogether #hsadvocate #gocreateanadventure __________________________________________________ A B O U T H I D R A D E N I T I S S U P P U R A T I V A (H S) Hidradenitis Suppurativa (aka HS) is an extremely painful and often times a very debilitating auto-inflammatory disease. There is no known cure for HS. It is very much misunderstood and quite often mislabeled, or simply written off by medical professionals who are not educated enough on the disease. Even though HS affects around 4% of the global population ( that’s 313,840,000 people! 😳) it is still not very widely studied or known about. Rest assured that many of us HS Warriors are fighting every day to try and bring awareness and education about HS, to the world. But we want to recognize and send a shout out to all of the amazing people that have to deal with this terrible disease…and to the families of HS Warriors…and to their caretakers (all of whom often times know more about the disease than the doctors). __________________________________________________ J E R E M Y ’S S T O R Y My name is Jeremy, and I am an HS Warrior. I am a professional photographer/videographer, audio engineer, and musician/composer/producer. My journey with HS started around the year 2014. I noticed lumps in my armpits and waist that got larger than normal, and often drained and came back, unlike a typical ingrown hair, which is what I thought they were for a long time. At a routine doctor’s visit for my asthma medicine, somehow the nurse and I got on the subject of these “flares” that kept popping up. She looked at one, and in one second said “that’s HS”. I had never heard of that before…nor did I take it seriously. As time progressed, so did the disease. Around a year later, I was actually diagnosed by a doctor, so I started seeing a dermatologist. This is when the treatments began. I’ve had every treatment you can think of, from various long-term antibiotics to multiple topical solutions, to Humira, to steroids, and every home remedy and random suggestion you can imagine! (I literally had warm cabbage leaves tucked in my groin and armpits, multiple times) I went through an extremely rough and dark time for nine months, from 2020 into 2021, when this disease had me bedridden. The HS had gotten so bad that I could barely walk, and could hardly lift my arms from my sides. My wife Jillian had to do everything for me, including cutting my food. One of the very difficult parts about being bedridden, and what made it such a dark time, was that everything that I was, what made me, ME, this disease took away from me. I couldn't sit up. I couldn't hold instruments. I couldn’t lift my arms to hold my camera up and take pictures. Everything I was, that made me creative, was now gone. It was replaced with a literal 24 hour a day cycle of pain, with no hope for a cure nor a “light at the end of the tunnel”. This brings me to where we are today. After getting better and being able to walk again, I really got myself back. My wife and I went on MANY adventures, and it seemed like we were making up for the year we had lost. I feel I had done some of my best photography work after finally being able to lift my camera again. During this time, because of an amazing interview that I did for the REFigured Project, I was inspired to come up with the idea of doing a video project that allowed fellow HS Warriors to tell the story of their HS journey, and show off their passions and talents. We want to give people the spotlight, to show that HS doesn’t define them. Since my wife and I travel around the world for work already, it made sense to make this project international. “HS Connecting the World: Warrior Stories” was born. __________________________________________________ F O R M O R E I N F O R M A T I O N: https://www.hsconnect.org/warriorstories [email protected]