Hello, I’m Roni and I live in Mason, Ohio a suburb of Cincinnati, with my husband and two step-daughters. As a child I had “sensitive” skin and what my mom called ‘heat rash’. At the age of 15 I was diagnosed with PolyCystic Ovarian Syndrome and had my first real surgery. In my 20’s I developed small bumps and thought they were infected hairs or maybe due to the type of deodorant I was using. During this time I was on several medications for my PCOS and also going through fertility treatments.
In 2018, when I was 38, I developed a hole in my armpit that would not heal. I went to a local dermatologist who did several tests, from blood work to inserting swabs into the wound in my armpit. At this point my family doctor and dermatologist were stumped. I had been in the hospital multiple times. I developed Clostridium Difficile Colitis and at one point I was hospitalized for Sepsis. On top of everything else I was diagnosed with Psoriatic Arthritis. For about 8 months the hole in my armpit kept being bigger and I was not getting any answers.
My family doctor referred me to an Infectious Disease Doctor. On my second visit the doctor sat me down and said “What I think you have is very serious; it’s Hidradenitis Suppurativa”. She started me on more antibiotics and referred me to a surgeon. I felt so happy to finally have an answer, but when I googled it I was amazed at how little information I could really find.
I was a Parole Officer and the rubbing of my vest was irritating my skin drastically. In December 2018 my doctor advised me to stop working due to the vest and impact on my HS.
In January of 2019 I had my first HS surgery by a general surgeon who cut part of my armpit (axilla). I saw him after surgery with concerns that my wound wasn’t healing properly. He used Silver Nitrate and sent me home with about 10 sticks that looked like long q tips and said “Whatever you do, don’t let this touch your skin other than the wound!” I was dumbfounded! I asked my family doctor for wound care and she set me up with an awesome team of nurses who took great care of me.
I continued to have issues and was referred to another general surgeon. This time I was sure to ask if he was familiar with HS, which he affirmed he was. This is where it gets really scary. In May of 2019 I went in for another HS surgery. I was put in the room and ready to go when my start time kept getting pushed back. Finally I was wheeled back and given some of the “feel good” meds (granted this is about my 10th surgery and I learned to look forward to the feel goods), but this time I didn’t feel good. I got really hot and sweaty and had stomach cramps and nausea. I remember telling the nurses I didn’t feel right as they moved me to the operating table. I woke up to my surgeon asking “did she code?” repeatedly. I learned that during my surgery the nurse reported that my pulse was 130, O2 saturation dropped to 25, and I was grayish purple. A code was called for assistance. My surgery was stopped, they kept me for a few hours for observation and then sent me home.
I felt devastated, hopeless, and angry. I went home feeling worse than when I went in. I developed Pneumonia and was readmitted into the hospital. Once I was finally cleared I went back into surgery in July of 2019. I had surgery in both armpits and my lower abdomen. I was left with multiple wounds that had to be packed daily. It was the worst pain I have ever endured; I was miserable. I couldn’t move, wash my own hair, or do anything for myself. I relied on my husband for everything. I became very depressed and anxious and started to see a therapist.
I then went on a hunt to find a doctor who specializes in HS and came across HSconnect.org which was a total life saver! I found Dr. Huggins in Detroit, Michigan. Yes, it is a 4 ½ hour drive one way but it is worth every mile driven. To be able to go into a doctor’s office and not get the weird look when they start on your medication lists and history of surgeries is worth it.
In January of 2020 I had surgery at the Henry Ford Medical Center and received the absolute best care by Nurse Rico. The staff was beyond amazing and ensured my family was kept informed and they prepared us for our long road trip home. I had pads in both armpits, abdomen, groin, and upper thighs. I waddled very slowly.
While recovering I recognized that my goal was to speak for those with HS who feel they have no voice. I wanted to be around more warriors and work with warriors toward a common goal. I am now retired and learning to embrace this new chapter in my life. I am grateful to be a part of this wonderful organization. I want to help others learn and raise awareness about HS, educate everyone I come in contact with, and most of all, be there when you need a voice.