Beauty and wellness writer Kaleigh Fasanella reflects on her experience living with Netherton syndrome.
By
Kaleigh Fasanella
May 3, 2021
Roughly six years ago, at the onset of my career as a beauty reporter, I penned a personal essay for Yahoo about living with Netherton syndrome, a rare genetic skin condition categorized as an “orphan disease.” It affects fewer than 200,000 people nationwide, and the anomalous malady manifests itself through red scaly rashes, hair abnormalities that cause acute breakage, and a weakened skin barrier that increases the risk for infections.
Netherton syndrome is an inflammatory disorder that falls under the umbrella of ichthyosis—a group of around 20 different skin conditions typified by extreme dryness—and is caused by a mutation in the SPINK5 gene, which prohibits the skin barrier from functioning properly. As a result, my skin cell turnover is expedited twofold and requires me to exfoliate once or twice a day. This leaves my limbs aggressively dry, raw, and vulnerable to external aggressors like pollution, UV exposure, and other allergens known to irritate and age the skin (as well as scary infections like staph, which I’ve had several times).
So what happens if I don’t exfoliate daily? I turn into a walking snowstorm of dead skin. And because my barrier is so compromised, I’m constantly losing water from my epidermis, which makes it extremely tough to keep it well hydrated. To paint a picture for you: I’ll slather on an ultra-rich moisturizer immediately after showering, something like that Cetaphil one in the tub, and my skin will still be cracked and dry as sandpaper an hour (or less) later.
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