My name is Kayla. I live in Arkansas. I have a Masters in Media Communication with a focus on social media and brand management. My Hidradenitis Suppurativa diagnosis inspired me to learn more about the ways to communicate with individuals and reach them on all platforms. I joined up with HS Connect because their mission is the same as mine. They provide educational content and sources for those with HS. Knowledge is power and I want to help to spread awareness.
I have lived with HS since I was 11 years old. When I was younger I was not confident in speaking out about my flares. I never told anyone until I was 19 and that was to the man who is now my husband. He helped me to feel confident enough to speak to doctors about what I have. The process was not easy. I had two separate gynecologists that assumed it was a sexually transmitted disease and was tested for all types of things. I had one doctor who thought it may be an immune response to cancer. I received more tests. I became tired and lost. I stopped going to doctors and began diving into the internet to find out more information.
My boyfriend, now my husband, came across a Reddit post of someone discussing a group in Canada raising awareness. One last time, I decided that since I could now put a name to it, I could tell a doctor. I decided to take a different route and start off small. I chose a woman who was a local APN. It was the first time I had a female as an option with my insurance. When I met her it was like a breath of fresh air. I felt like I wasn’t just there to be told what to change or tests to take. She knew what HS was and talked with me about my symptoms. I showed her my flares and she confirmed what we thought, I had Hidradenitis Suppurativa.
Once I was diagnosed the next step was trying to figure out what steps to take to improve it. I was never asked to lose weight or to shower more. I also was only given medication when it was needed as I told her I didn’t want to take a lot of antibiotics and pain meds other doctors gave me. I began my journey of creating better habits and practicing alternatives that individuals mentioned online.
My husband inspired me to speak up and I developed a blog that announced my diagnosis and shared it with my friends and family. It was like a weight off my shoulders. I started getting contacted by people locally and online with the same symptoms. I found a group and now what I feel like is a calling.
I hid for so long and I found that what I want to do is raise awareness, raise kindness, and support individuals like me, who were too scared to reach out or were confused. I wanted to give clarity and help everyone to know they weren’t alone. Man, Woman, or Child, it affects us all.