I have a chronic skin problem. Does the beauty industry care


About six years ago, at the start of my career as a beauty journalist, I wrote a personal test for Yahoo living with Netherton syndrome, a rare genetic skin disease classified as “orphan disease. “It affects less than 200,000 people nationwide, and the abnormal disease manifests as red scaly rashes, scalp and hair abnormalities that cause acute rupture and extreme shedding, as well as a skin barrier. weakened which increases the risk of infections.

Netherton’s syndrome is an inflammatory disorder that falls under the umbrella of ichthyosis – a group of about 20 different skin conditions characterized by extreme dryness – and is caused by a mutation in the SPINK5 gene, which prevents the skin barrier from growing. working properly. As a result, my skin cell turnover is double and requires me to exfoliate once or twice a daytime. This leaves my limbs aggressively dry, raw, and vulnerable to external stresses like pollution, UV exposure, and other allergens known to irritate and age the skin (as well as scary infections like staph, which I have had several times. times).

So what if I not exfoliate daily? I transform into a walking snowstorm of dead skin. And because my barrier is so compromised, I am constantly losing water from my epidermis, which makes it extremely difficult to keep it well hydrated. To paint a picture for you: I’ll apply an ultra-rich moisturizer immediately after showering, something like Cetaphil’s in the tub, and my skin will still be cracked and dry like sandpaper an hour (or less) longer late.

This content is imported from Instagram. You may be able to find the same content in another format, or you may be able to find more information, on their website.

To my surprise, the essay I wrote landed on the homepage of the site where it was seen by legions – and shortly thereafter my inbox was flooded with messages from people from the all over the world who have had experiences similar to mine. Strangers with eczema, psoriasis and other skin conditions have praised me for writing so candidly and showing that it is, in fact, possible to thrive despite a skin disorder. This sense of purpose is what ultimately shaped my career as a writer, which primarily focuses on raising awareness of skin issues and advocating for people living with chronic skin conditions. It’s also what kept my head afloat while being up to my neck in an industry that was never designed for people like me.

After graduating from college, I moved to New York City with the goal of becoming a beauty writer and eventually landed roles at Vogue teens and Seduce. At the same time, my skin had deteriorated – a combination of stress and urban pollution, and entering adulthood, if I had to guess – and despite everything I had done to get around, it It was getting harder and harder to look good, especially without the unwavering support I had received from my parents and friends during my formative years.

I have lost count of the number of allergic reactions I have endured to the detriment of products that claim to respond to weakened skin.

Still, working in a beauty magazine has turned out to be quite amazing in many ways. The countless free products at hand and the amazing experts I got to interview are just two examples. Over time, however, certain aspects of the industry started to stick out like a sore thumb. Like how many brands litter their products with meaningless marketing jargon, casually using terms like gentle, soothing, and Non irritantdespite the fact that they still contain irritants that are too aggressive for a skin as fragile as mine. I have lost count of the number of allergic reactions I have endured to the detriment of products that claim to respond to weakened skin; yet, because they were labeled as safe, I ended up blaming myself.

Meanwhile, common skin conditions like eczema and psoriasis, which affect millions of Americans and people around the world, have become increasingly common topics in the media. Popular, almost. Leading celebrities like Cyndi Lauper and Kim Kardashian have started sharing their experiences with these ubiquitous skin ailments on Instagram, which has helped reduce stigma and spark interest in the topic of chronic skin conditions. Netherton syndrome, on the other hand, still didn’t make the headlines. So I started writing more about generalized skin conditions for the masses. During this time, I felt more isolated than ever. I was there, writing about these diseases that have touched millions of people, while silently suffering from a disease barely on the map. Eventually when people asked me about my skin, I started to say, “Oh, it’s like eczema and psoriasis, just a little rarer,” although I knew it was like eczema and psoriasis. was far from the truth.

This content is imported from Instagram. You may be able to find the same content in another format, or you may be able to find more information, on their website.

Working in beauty, while incredibly cool, has made life with a rare disease more difficult. You can imagine how the stories about how to achieve “clear, in good health skin ”could begin to weigh on someone who by nature would never have that. Or how disheartening it can be that, despite the normalization and discussion of other conditions in the mainstream media, Netherton Syndrome is still struggling to be part of the conversation. Hell, even some top doctors don’t have a full understanding of my condition. I once saw a reputable dermatologist on the Upper East Side to get Botox, and when I told them I had Netherton Syndrome, they looked at me with a puzzled expression before recommending a cream. against eczema at random for my “terrible situation”.

The skin-obsessed culture on social media, especially Instagram and TikTok, hasn’t been the best for my sanity either. Of course, we’ve seen an exciting progression in skin acceptance, with more and more people posting acne selfies and sharing their experiences on the condition of the skin. But that’s a paradox, because at the other end of the spectrum we have skin warping filters ready, and teens are talking about their retinol routines before they even form fine lines. Of course, I am also an accomplice. Some days I’ll lose so much skin that I have to vacuum twice, but what the world sees on my grill is a golden hour selfie, redness masked with a color-correcting primer and a concealer, and no proof of my reality. looks like.

While I have access to the latest and greatest skin care on the market, I have learned over time that no serum or moisturizer, no matter how expensive or smartly formulated, will solve my flaw. genetic. I also realized that skin and mental health are inextricably linked. So when I am stressed my skin suffers as well. Then I am overwhelmed by the condition of my skin and it turns into a vicious cycle of anxiety, a carousel of emotions that it can seem impossible to escape.

However, the burden of healing should not rest entirely on my shoulders. The beauty industry is also expected to adapt.

For this reason, I started seeing a psychodermatologist last year, a therapist who specializes in helping people with chronic skin conditions. Currently, we are working on managing my stress, as well as reframing the relationship I have with my skin after all the trauma. I also joined an online community for people with chronic conditions called Chronic, which allowed me to feel much less alone in my distress; it reminds me that I’m not the only one struggling with something on a daily basis. However, the burden of healing should not rest entirely on my shoulders. The beauty industry is also expected to adapt. We’ve seen so much progress in representation and inclusiveness, with conditions like acne, eczema, and psoriasis no longer showing the same stigma as they once did. But what about the 3,000 other skin disorders that still remain in the margins of visibility? What about human beings carrying the weight of these diseases and the isolation they feel?

I’m not naive enough to think that beauty brands will suddenly start formulating products for rare diseases like Netherton syndrome, but I do I firmly believe that we can work to create more space and opportunities for people like me to share our untold stories. Real inclusivity goes beyond sharing a beautiful photo of someone with acne on Instagram; it also lies in the awareness and representation of lesser known diseases. It means publicly celebrating all skin – healthy or not.

This content is created and maintained by a third party, and imported to this page to help users provide their email addresses. You may be able to find more information about this and other similar content on piano.io


About Author

Leave A Reply