Alex Volker is a microbiologist who lives in Iowa. They’ve lived with hidradenitis suppurativa (HS) for about 10 years. In this video, they talk about their experience on an injectable biologic medication and the ritual they use to help calm their fears about injecting the medication.

In an extended interview, Alex spoke about when their HS was at its worst. Not only was it physically painful, but it was also exhausting mentally. They noted discomfort when wearing certain items of clothing, like the jeans they have to wear to work, and how the pants were uncomfortable against the HS flares on their thighs. Caring for their wounds every day, dealing with uncertainty about whether they would heal or get infected, and coping with daily pain greatly affected their quality of life.

When seeking help, Alex prepared for an appointment with their primary care doctor. They brought a list of their symptoms, where they were on their body, how long they lasted, and what over-the-counter products they had tried and if they worked or not. This information helped prompt their doctor to provide a referral to a dermatologist.

Once Alex finally received a diagnosis of HS, they felt relieved. Their doctor recommended they start a biologic treatment right away. Shortly after diagnosis, they also discovered myHSteam and connected with others going through the same thing.

While Alex initially had fear around the idea of injecting medication for their HS, they developed a ritual to help them get through it. After being on a biologic medication for about five months, Alex feels their quality of life has improved. Their HS flares have been less frequent and also less severe. They reported experiencing less pain and fatigue, while having more energy to do things they enjoy, like gardening and meeting their friends for walks.

“It’s a huge difference. I would say that before treatment I was getting flares regularly, weekly — at least two or three every week. And now that I’m on treatment, it’s maybe one a month," they said.

Find Your Team

For others with HS, Alex wants you to know that you’re not alone. Connect with Alex and others living with HS on myHSteam, where over 35,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

Did you experience fear around starting an injectable medication for HS? How did you manage those feelings? Share your experience in the comments below, or start a conversation by posting on your Activities page.