Hello, my name is Parish and I’m a 32 year old male who lives in Buffalo NY and I have HS Disease. This is my story
I was 11 years old when my HS symptoms first appeared as a big bump under my armpit. I remember being shocked by it and I did seek medical attention, resulting in my first surgery. It took 18 years for me to get a proper diagnosis of HS, but not by a doctor. I was actually diagnosed by a Buffalo UB medical student working in the doctor’s office that took a look at me and my records.
In 2008 I was getting neck surgeries done by this one surgeon that just kept cutting out the recurring abscess and I wasn’t getting anywhere. By the 3rd surgery the UB student suggested getting a CT scan, and they found a few more abscesses hiding underneath. He then started explaining to me what hidradenitis was and that my case looked like stage 3 because I had it in my armpit, neck and inner thigh area pretty bad.
It took a while to get my management under control but my current treatment plan involves IV antibiotics along with steroids. That combination has been helping me out of the mist with infection and my wounds. Yes, some things have changed after being diagnosed like my diet and watching some of the things I eat. I used to just eat whatever I wanted, like lots of processed foods.
I started by just doing little changes to my diet. Things like drinking more water and eating more veggies. Also I started cooking most of my meals which helped me out by giving me more energy and I noticed a little change in my flares as well. Also, I make sure I keep any wounds clean by washing with Hibiclens.
The area of my life that living with HS has impacted the most would definitely be my career. I had to stop working due to all the wounds in my lower area. Also, my relationship with friends and family have been affected because they really didn’t understand why I would be in so much pain or tired all the time. When I’m dealing with the negative feelings often associated with HS I try to stay positive by thinking about the people that love me and need me around. I like to write about my experiences with HS as it’s a good stress reliever.
Yes, I have discussed my HS with my friends, family and Co-workers. When I finally had the guts to tell them about it they were surprised and didn’t know how serious it was. Even talking about it to my bosses that I worked with they didn’t think it was serious when I needed time off. Most people though reacted in a way that made me realize this condition is really underground and needs more awareness.
They were really surprised, especially when you start explaining where the abscesses are. I got a lot of reactions from people saying I’ve never heard of HS before or saying I think I have HS because I go through the same thing. Even with some doctors or nurses they say I’ve never heard of Hidradenitis and you’re teaching me something new! Looking online, you would think that HS would be more known because of how many people have it. I think a lot of us don’t talk about it though, which would raise more awareness. HS is more than just a boil; it affects our whole life.
I do have a hero in my life and it’s a fellow HS patient I met on Instagram named Pain Hs. He has been through a lot and he’s always a positive person when dealing with the severity of his HS. He also keeps me pushing. I do have a few tips that help me manage my HS that other people might find helpful. Things like trying to stay stress free and eating as good as you can help. Cleaning your wounds and seeking medical attention if something doesn’t feel right are also important. Don’t be afraid to get to know your body.
I’ve met so many cool people who have HS, and by telling my story in music form on Instagram, Facebook, and YouTube I’ve motivated people and made them smile just from talking about this sad condition. If I could say anything to a fellow HS hero who was struggling I’d say to take it easy. HS can be difficult at times and it takes time for some wounds to heal.