A family of penguins linked, each showing different signs of HS.

Well, It Does Run in Families: How I Learned that My Family Members Also Have HS

“Your skin issue, are they like boils, and do you get them in your armpits?”

We were standing in the kitchen of a large rental house in northern Michigan. It was my aunt’s 60th birthday and she and her sisters had gotten together to rent this house to celebrate. A few months after my latest surgery for hidradenitis suppurativa, my mom and I drove the 8-hour trek from southern Ohio to join the party.

Family members with hidradenitis suppurativa

I had surgeries for HS in May of that year on both of my thighs and my left armpit, followed up by several plastic surgeries. Since this surgery was so large, my mother had definitely discussed it with her sisters. So they knew of it, even if they did not know all the details. I was still healing from that surgery when we went to Michigan for the birthday party but I was mostly on the mend. It was fresh in all of our minds so we were talking about it around the counter in the kitchen.

My other aunt (the non-birthday girl) asked me this question and I looked at her shocked. “Yes,” I said, “and they’re big and painful and often come back.” She told me, “I think I might have the same thing. I get these large bumps in my armpit every so often but they do come back.” “Well, it does run in families” My mom interjected.

This was the first time I had heard anyone in my extended family mention that they might experience something like I do. I knew HS ran in families but it is also something no one really talks about. My brother actually also has HS, although a more mild form. But I had not asked everyone else in my extended family. This was further proof to me that HS does run in families.

Learning of others with HS

Later that same year, I visited my cousin in Virginia. Coping with surgeries and medical issues made this a difficult year for me and I needed a break. As we always do, we spent most of the first night catching up and talking into the middle of the morning. She asked me about my surgeries and HS. One thing led to another and she was telling me about how she had the same issue!

It turns out we had both been suffering from HS for years, since we were children, and had never told each other about it. She had been recently diagnosed with it by a dermatologist and wondered if this was the same skin disease I was struggling with. We lamented that had we both been diagnosed sooner, we could have been supporting each other all along. She showed me her scars and, yup, the scars that HS left on her body looked exactly like mine.

Hidradenitis suppurativa can feel isolating

My cousin loves to be at the beach and lay in the sand, so when we were teenagers, we used to go to the beach all the time. Of course, being a teenager and wanting the approval of my cooler and slightly older cousin, I was mortified by the scars on my thighs and did everything I could to hide them. In retrospect, if I had just talked to her sooner about my experiences, we may have been able to help each other years before we had both been diagnosed with HS.

I often feel alone when dealing with my HS. As it turns out, I have family members with HS on both sides of my family! HS is so unknown and underdiagnosed that I was unaware of this until I was in my 20s. If I had not started speaking up about my experiences with hidradenitis suppurativa, my cousin and my aunt may have never known that we share the same diagnosis. Now we can support each other and learn more about this skin condition that we share.

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