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My name is Alex and I live with hidradenitis suppurativa, also known as HS, and I‘m a member of myHSteam. For anybody who‘s living with HS, you‘re not alone. You didn't cause this. It‘s not your fault. There are treatments. There are things you can do to still live a good life even though you‘re dealing with this disease.
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The dermatologist took a look at my active flare and went, “Oh yeah, that‘s definitely HS. Sorry,” (laughing) and then after that, he very promptly said that in his opinion, the best treatment that he could give me was biologic option. I went and read through the entire list of side effects and being able to see that for a lot of those scarier side effects, the risk was pretty small.
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That made me feel a lot better about being willing to try a biologic and move forward with treatment. To kind of get over that psychological fear of doing the injections, I developed a little ritual where about an hour before I was going to do the injection, I would take the biologic out of the refrigerator to let it warm up.
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I would make a cup of my favorite relaxing tea, and drink my cup of tea, and I would put on some calming, relaxing music in the background, and then I would get ready and go ahead, and do the injection. And as I‘ve gone on, it‘s gotten to be less and less of a psychological fear and something that‘s easier and easier to do.
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I really feel more unencumbered now that I‘ve been on treatment, and I don‘t have to worry about whether I can do active things like going out hiking, meeting my friends for a walk. I don‘t have to worry about whether I‘m going to have the energy after work to do things. It‘s been a really positive experience for me so far.
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I know it isn‘t for everybody. For me, it was definitely worth it, and I‘m glad that I overcame my fears and decided to give it a shot.
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.
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.