How aHUS treatment led to my first tattoos

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

“OK, guys, I told you Mom is cool. Your mama just got a face tat!” My youngest child furrowed his eyebrows as he peeked over his phone screen to see what I was talking about. My oldest looked at me with confusion. I take every chance I can to embarrass my kids and make them laugh, and my recent adventure provided the perfect opportunity.

I pointed at my face and said, “See, I’m tough! Two face tattoos in one day.” They both rolled their eyes with all the tween attitude they could muster. But they also snickered at my antics, which meant mission accomplished.

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Life-changing ink

I recently got my first two tattoos ever because of treatment for my ultra-rare disease, atypical hemolytic uremic syndrome (aHUS). After debating it for some time, I finally got eyebrows tattooed. Mine were never prominent or full due to lupus, and this only worsened after I got sick in 2020 and started on Soliris (eculizumab).

In my case, aHUS was activated by an asymptomatic bout of COVID-19. The condition causes my immune system to destroy my red blood cells and leads to the formation of blood clots in my organs. This dramatic flare also triggered my immune thrombocytopenia (ITP), which I’d been diagnosed with in 2018. Both aHUS and ITP result in the destruction of platelets.

While my treatment, Soliris, is a monoclonal antibody infusion, its side effects, for me, are similar to those of chemotherapy. But everyone responds differently to the medication; some have debilitating side effects, while others don’t experience any.

One of the biggest side effects I noticed was hair loss. It started with the hair on my head. While washing it, huge clumps would come out in my hands (which still happens). Then, my eyebrows and eyelashes got thinner and thinner. For the past five years, I’ve been drawing on my eyebrows every single day. It was the first thing I did when I woke up — even before I went outside to sit on my deck.

Many people don’t realize how much eyebrows can complicate your day. Drawing them on every morning eats up time, and eyebrow pencils are expensive. Most brow pencils aren’t waterproof or sweatproof, so if I go swimming or work out, I risk them disappearing. It’s also easy to accidentally rub off a penciled eyebrow. I always carried brow pencils and checked my eyebrows often.

I’d looked into tattooing my eyebrows several times, but it was very costly. However, I recently found an amazing deal, so I went for it. While I was scared of the needles and potential pain, it didn’t actually hurt that much. I almost fell asleep a few times during the session! It also helped that having my blood drawn and an IV placed every other week has lessened my fear of needles.

Unless other options arise, I will likely be on Soliris for the rest of my life, meaning I’ll always have little hair. Getting my eyebrows tattooed has been life-changing. I have a new confidence in my appearance. I won’t need to waste time drawing on brows every morning, and I’ll save money on eyebrow pencils, temporary brow tattoos, and brow stains. My first tattoos may not have been typical, but they’re perfect for me.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.