Living with Rosacea, The Most Common Unknown Skin Disease
I never thought the thing I would struggle most with in life would involve my skin, but when I developed rosacea almost overnight during my first pregnancy, I was left fighting in the dark. For the blessed and unaware, rosacea is actually a fairly common skin condition (in the USA it’s an estimated 14 million) and it can cause your face to appear in a myriad of strange ways - sandpaper scraped skin, bumpy lumpy texture, and broken capillaries, to name a few. And yet, despite the prevalence of this skin condition, so few (including those who have it) understand what it is, let alone how to treat it.
Me at the worst of my most recent rosacea flare-up.
Looking back, the warning signs were always clear. I would blush easily as a child and teachers would often remark on how “cute” my rosy cheeks looked. As a teen, I always had a pinkish hue across my face, but since I struggled with cystic acne, I never thought twice about it. Many of the leading sources on rosacea claim that it starts in late 20’s to mid 30’s, but I would anecdotally dispute that. To me it seems, so many of us with rosacea have had this disease our whole life, we just didn’t know it until it got severe enough.
My own mother has rosacea but was never formally diagnosed until I was. She has subtype 1, which is mainly erythema and simply spent her whole life wearing heavy foundation instead of questioning if there was something that could be done about it. For me, it was so much more than redness. In the second trimester of my first pregnancy, I suddenly developed profuse redness across my face accompanied by extremely dry, flaky patches. There were also tiny acne-like bumps all across my cheeks and nose. I treated this as if it were acne and vigorously washed my face with salicylic acid cleansers and benzoyl peroxide spot treatments. When things got worse, not better, I finally went to a dermatologist for help.
Unfortunately, rosacea is often mistaken for other common skin conditions such as acne, eczema and seborrheic dermatitis. I was treated for all three before settling on the diagnosis of rosacea, and being pregnant, there was the added confusion of not knowing what was normal for hormonal skin and what wasn’t. Once rosacea was identified as the culprit, pregnancy also made treatment a tricky thing as well.
Antibiotics are a common course of action, but many are unsafe for pregnancy. So, for several months I went without any treatment at all. This was back in 2015. My dermatologist at the time suggested Finacea (azelaic acid 15%) as a topical treatment, but it was brand new and cost nearly $300. When I asked if there was anything else I could do, I was met with “you’ll just have to wait until you’re not pregnant.” And while dealing with itchy, burning skin for nine months is something I could get over, rosacea can get irreparably worse over time. Time, I had no choice but to take.
I had my beautiful baby. My skin, once pretty and pink, turned a harsh rouged purple. I went on doxycycline to heal the damage that had been done, but with each subsequent pregnancy (I had two more) my rosacea got worse. Had I been more educated on the nuances of rosacea and how to discuss this disease with my dermatologist, the prognosis may not have been as severe.
Luckily, there have been many advances in treatment options for rosacea suffers since my first encounter with it. But what are the signs? How can a patient in 2021, with so much access to unlimited information, understand and then identify the symptoms of rosacea? More importantly, how can patients then take this knowledge to their dermatologist to create a comprehensive treatment plan?
When talking to followers on my blog, YouTube, and Instagram, I always recommend individuals start a diary to track their symptoms. This includes taking photos of their face for two weeks to one month to track any and all changes. Any and everything is fair game - skincare, makeup, laundry detergent, the temp on their thermostat - all affects the severity of symptoms. I also encourage people to take notes on whether or not their irritation seems to spread, develops bumps or pimples, or if it goes away and then comes back at different times of the day or in different situations, as heat and emotional stress are also common triggers.
Once they’ve documented and kept a diary of their skin for a few weeks, find a dermatologist that specializes in rosacea! Take the information gathered and discuss it to find the best possible treatment, whether it be through topicals, antibiotics, Accutane, or some combination of each. I also encourage people to become familiar with the various subtypes of rosacea, since each looks so different.
How my rosacea looked nearly a year after my first flareup
It’s been nearly six years since I first developed severe rosacea, and it’s quite literally changed my perspective on self-advocacy and skin health. You can still tell I have rosacea now, albeit not as intense. The acne I experienced as a teen is still present thanks to my other diagnosis of polycystic ovarian syndrome. The difference? I now recognize rosacea for what it is - a skin disease. It is not something superficial that can easily be fixed with over-the-counter cleansers and homeopathic remedies. It requires medical attention, otherwise it will spread and could even change the shape of your face (rhinophyma) or take away your sense of sight (ocular rosacea).
Thanks to the pandemic, I have seen a wave of community support groups pop up surrounding rosacea (my own Instagram and blog included). According to a recent study, 63% of rosacea sufferers have reported a worsening of symptoms due to mask wearing and only 33% of those same individuals said they have visited a dermatologist since the start of the pandemic. Education is important now, more than ever. I just wish I could send a message to everyone struggling with this disease, that there is hope, and while a cure doesn’t exist, remission and healing from symptoms is possible.
