Newest TSW Club Member: YouTuber Joana Ceddia

On February 4th, 2021, a big Youtuber by the name of Joana Ceddia released a video on her channel titled “I’ve been lying to you all for the past 6 months lol,” where she dons a puffy winter jacket and oversized sunglasses as she sits in her bedroom and tries her best to hide her visible TSW flares. Within a few hours of her releasing it, a fellow warrior posted the video where she reveals that she has been keeping this information to herself for the past 6 months. That for these past 6 months, she has been going through something called topical steroid withdrawal.

A win for the TSW community

Ceddia releasing this video to her 3.28 million subscribers is brave and a huge win for our TSW community. Awareness (paired with data and research) will help bring attention to our iatrogenic illness so it may finally be recognized by the world and the medical community. Of course, more work needs to be done for TSW to officially be recognized (more data needs to be gathered) but having a brand new audience of 1.2 million in just 2 days is pretty good.

Eczema care hasn't changed

She does a reenactment of her doctor’s appointment where she tells her doctor that the steroid creams are no longer working. Her doctor just tells her to use more. This is so typical of nearly every one of my doctor’s appointments. It’s sad, actually, that seemingly so many doctors are just not listening to their patients. According to Google, Ceddia is 19 years old. I am 34 years old. That means that it’s already been 15 years, and the care for “eczema” has not changed as drastically as it should have to prevent this iatrogenic illness.

Leaving school because of skin problems

She continues to tell her audience that her condition - the incessant itchiness and so many other torturous symptoms - forced her to leave university. Nearly 10 years ago now, when I went through one of my first big TSW flares, I had gradually stopped attending classes at my local college. The constant pain, itchiness, and sleepless nights left it nearly impossible to get up and make it to classes in the morning. I continued to be hopeful that my flares would subside, so I never withdrew nor dropped my classes - which in the end did me more harm than good (at least on my transcript) because TSW flares are not minor, and they don’t just go away miraculously in a 'fewer-than-one-to-several-years’ time period. I remember looking online, trying to find other college students who had to leave university suddenly due to health issues, in hopes I would find someone describing a skin condition that sounded like mine.

Connecting with others who share stories

Unfortunately, I never found that person who left college because of their TSW. That’s one of the reasons I choose to share my story. So that I can be that person for someone else. And I’m so happy that someone like Ceddia, who has so much influence, has decided to do the same, even at such a young age.