ORIGIN STORY – SABRINA

Hello everyone, my name is Sabrina and I’m a 23 year old female from Martinsville,IN and I have HS disease.

This is my story….

I first developed symptoms of what I now know is HS when I was 20 years old. My initial reaction was that I felt scared and embarrassed, which led me to not see or tell anyone for quite awhile.

It took me 3 1/2 years to get officially diagnosed with HS. The first 2 years of me going undiagnosed was just due to embarrassment and a fear of being judged. When I eventually got the courage to share what I was going through, my PCP [Primary Care Physician] said that it was maybe a heat rash. After several months of it not going away, she referred me to a breast cancer doctor (since my flares were on my chest at the time) and that doctor said that it was more than likely benign bumps.

I just felt like giving up, so I didn’t pursue seeing another Doctor about my symptoms for a while. However, when a family member later suggested I see a dermatologist instead, I was diagnosed with HS in September of 2023. Luckily, that doctor was very familiar with HS and was actively seeing patients with the disease.

HS has 3 stages of severity with 1 being less severe and stage 3 the most serious, and I have stage 2. My current treatment plan has me taking prescribed medications, they are : Clindamycin Phosphate Lotion 1% [1-2 times a day as needed] and Spironolactone (100mg tablet) that I take every evening. I’ve been on these medications since first getting diagnosed and they have helped tremendously.

An area  of my life that I would say HS has impacted is the way I view myself. Some days are good and some are bad. I have not wanted to leave my house multiple times due to anxiety and depression, and have missed multiple social events or outings due to my mental health and the pain I would be in. When I worked as a First Responder and in Hospital Settings I missed work several times due to the excruciating pain that HS brings.

I stay positive while dealing with the negative feelings that HS is often associated with by journaling my feelings & having support groups online. I have discussed my condition many times with family and friends, and their responses have all been very sweet and understanding. I have felt nothing but support from my family and friends.

The ” HS Hero(s)” in my life are the girls in my HS Awareness Facebook Group and those in my HS Discord Chat that I got plugged into via Reddit. Those are the people who get me or come close to understanding what I may be going through and how I feel and why. I love that I can talk to other people who also have this and not feel so alone. Joining a support group online or in person is something that I’d recommend to anyone living with HS. There are so many you can find, and having at least one other person you can chat with makes a HUGE difference.

I’ve had several very positive experiences related to my HS. I am so grateful that the first dermatologist I went to was able to properly diagnose me with this disease, while being so kind and gentle. My family knows of my disease and they also check in on me & make me feel very loved. If I could say anything to someone who is struggling or a newly diagnosed patient it would be : you are valuable and you are loved.

Even though this disease is terrible, do not let it steal the joy that you can experience in this life. Continue doing the things you love and do not let it hold you back.