For women like me, hair loss can be particularly devastating

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.

The wind blew through the brown, loose curls that framed my face. As the gusts picked up, my hair blew to the left, like a gorgeous hair toss by an actress in a movie. I squinted against the wind as it brushed my eyelashes. I lived for moments like this, so I snapped a few selfies, as pictures like these are truly golden. It’s always exciting wearing a new wig and eyelashes that aren’t my own.

My hair has been a lifelong battle. There are deep systemic cultural issues surrounding Black women and our hair, with pressure from all sides forcing us to constantly debate whether to wear our hair naturally, in protective styles, chemically treat it, or use extensions, braids, weaves, or wigs, or sometimes simply giving up and shaving it all off. To complicate matters, a lot of my hair fell out without warning when I was in third grade.

I was mercilessly teased about it every single day. Eventually, I was diagnosed with lupus. After treatment and minimizing my stress (as best as a 9-year-old could do), my hair began to grow back. One weekend, my mom chemically straightened my hair, and I felt so proud. However, when I returned to school, I faced more teasing from classmates who claimed I was wearing a wig. I grew up hating my hair.

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Evolving standards

Fast forward to the fall of 2020. I was at the top of my game, remodeling my first home, working a new job with a pay increase, having lost 110 pounds, and dating again for the first time in three years. As for my hair, I alternated between long braids made from weaves and wearing wigs. I had some hair, but it was brittle and weak. Then, suddenly, I became very sick — so sick that I almost died.

I went to the emergency room, feeling terrible during the height of the COVID-19 pandemic. I assumed I had the virus, as I had worked around several sick children at my job. To my horror, I learned that I was suffering from multi-organ failure. I was admitted to the intensive care unit, where I spent weeks. Eventually, I was diagnosed with atypical hemolytic uremic syndrome (aHUS), an ultra-rare disease, in addition to a flare from another rare blood disease I’d been diagnosed with back in 2018, called immune thrombocytopenia.

Unfortunately, I sustained significant permanent organ damage to my kidneys, liver, heart, and uterus. I underwent a hysterectomy in 2021. I now live with uncontrolled hypertension and enlarged heart muscles. My kidneys are stuck in stage 4 chronic kidney disease. Because of this, my treatment options for aHUS are very limited. I can’t risk experiencing another flare of the disease, as my kidneys wouldn’t be able to handle it.

I am treated with a monoclonal antibody infusion every 14 days, which causes numerous chemotherapy-like side effects. One of the constant side effects I experience is extreme hair loss; my hair falls out in large sections when I wash it. No matter what I do, it remains brittle and dry. This is a crushing blow on top of fighting for my life.

The infusion also causes my eyelashes and eyebrows to fall out, so I have to draw my eyebrows every day. I sometimes use temporary eyebrow tattoos or stains that last for a few days. For my eyelashes, I either glue on fake lashes or line my lash line with heavy, black eyeliner to create the illusion of lashes from a distance.

My hair has always been a struggle, and I never anticipated that the causes would change so drastically. It’s fascinating how beauty standards have evolved over the past 30 years. I went from being ridiculed and accused of wearing wigs as a child to now wearing wigs daily and receiving compliments on my hair wherever I go.

Wigs and extensions are now a regular part of society. People pluck or shave off their eyebrows only to draw them on or even have them tattooed. Many people spend significant amounts of money getting fake lashes applied in salons. It’s wild to see how fake hair, brows, and lashes have become a substantial part of the beauty industry, especially considering the journey I’ve navigated over the years. At least now, people like me who face permanent hair loss have options and are no longer made to feel ashamed.

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.