Warning to Swimmers: My Nightmare With Eczema From My Goggles, EP 266

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Hello friends, this is Kelly Pallas, your host of the Champions Mojo podcast today.

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Well, we're going to talk about something that is a harrowing experience that I went through, and it was caused by my goggles, and I would like to speak with any swimmer that has ever had eczema or itchy skin or thought about using something to treat your itchiness from swimming.

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So this is a little bit of a warning.

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Some of you who know me well know this story, but there were many, many years where I was incapacitated from being able to swim, being able to leave the house.

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I was in what I call a living hell, a nightmare of a skin condition, and this is how it started.

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So I, like all swimmers, you spend hours in your goggles and I got, you know, deep rings around my eyes for my goggles, and I'd try to change goggles or lighten the tightness, the pressure on them, and I ended up getting eczema around my eyes.

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I went to my eye doctor and they gave me a little tiny tube of something called FML, which is a light topical steroid.

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So a topical steroid is the number one treatment for eczema or contact dermatitis.

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So sometimes you don't have to have eczema, you can just have a touch something or come in contact with something that makes you have an irritant and then you get an itchy rash that breaks out and you know they call eczema the itch that rashes.

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Eczema is super common 37 million Americans have adult Americans have eczema.

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Adult and children have eczema.

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And so the eye doctor gave me this.

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For my eyes it was little, tiniest little tube, but I started using it and, man, that stuff is awesome.

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It cleared it right up.

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Topical steroids came to market back in the 1950s.

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So it's been you know 75 years since they were brought to market, which means they were not tested.

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That's what the research says.

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They were not properly tested.

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They knew that they have an anti-inflammatory effect and they cleared up a rash, but then they gave it just the warning that, well, it can thin your skin.

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But it does a whole lot more than just thin your skin.

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And topical steroids come in the most innocuous over-the-counter drug called cortisone.

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You know hydrocortisone.

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You probably have a tube in your medicine cabinet right now and sometimes they even have a little Scooby-Doo figure on them.

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They're so you know they're.

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The dermatologist that gave me topical steroids said it's safe enough to put on a baby, which is a big giant lie.

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So the topical steroid problem that I had started around my eyes when I had this eczema and that cleared it up, but then I kept needing to use it to keep the redness away from my eyes and then the eczema started spreading where my goggles hadn't even affected me, from my eyes down to my around my mouth, down to my neck, and then I'd have to use more topical steroids there and then it started spreading to different parts of my body until I was taking steroid shots, steroid, heavier and heavier doses of steroid, topical steroid creamsids.

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So what?

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The warning here is that topical steroids do not cure eczema.

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Eczema or contact dermatitis is something that is usually caused by something you might be eating, something you might be touching, stress, lack of sleep, but it is.

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Topical steroids do not cure eczema.

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They do not cure contact dermatitis.

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They might clear it up in the short term, but there is something called topical steroid withdrawal syndrome, which is my absolute nightmare.

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So, topical steroid withdrawal syndrome.

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You can Google it.

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There are thousands of YouTube videos, youtube shorts, instagram posts on topical steroid withdrawal, and this is one of those things.

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In the medical community, we have a lot of doctors in our family that went through a certain dermatology rotation.

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They said they never talk about it because dermatologists have basically one tool in their toolkit or they did historically one tool in their toolkit.

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When an itchy person comes in, they want to hit them with steroids, either topical, or a pill or a shot.

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And I had all of them.

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I had pills, I had shots, I had steroid creams, just trying to get this rash that was spreading all over my body to go away.

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And they just kept giving me steroid after steroid, topical steroid shots, creams.

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So what happens with topical steroid withdrawal is it can affect, just like if you smoke cigarettes all your life.

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Most people are going to get some type of a cancer lung cancer but there are people that can smoke their whole life and never get cancer from cigarettes.

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But topical steroid withdrawal syndrome is still in such a new place.

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It's finally getting recognized, finally by the dermatology community, the American Academy of Dermatology, the National Eczema Association.

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I went through topical steroid withdrawal syndrome 15 years ago.

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15 years ago and the way that I figured out what was going on historically, prior to being a or post being a Division I head swimming coach.

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I worked in the pharmaceutical industry so I knew how to research clinical medical journals and I was having just this continuous skin issue where when I stopped my topical steroids, my skin would turn bright red and that was me needing more of the cream to control the inflammation.

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So at first I thought, you know, I live in Florida, maybe I was getting too much sun.

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I even thought, well, my computer screen, I'm on my computer a lot.

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Maybe that's it.

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Maybe I have a hypersensitivity to sun, maybe I'm allergic to the, you know, air fresheners and grocery stores or whatever.

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I thought it was some chemical sensitivity that I kept getting bright red, especially around my eyes, which was where I originally used topical steroids because of my goggle marks and my goggle itchiness, contact dermatitis.

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And I was researching an article one night and I came across an article entitled eyelid dermatitis to red skin syndrome to cure.

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And I thought, wow, eyelid dermatitis sounds exactly like what I have.

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And then I get red skin when I don't use my topical steroids and I want the cure.

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So I am going to contact the doctor that did this research.

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So I reached out to the doctor that did this research.

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He is a dermatologist located in Southern California and we became friends.

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I flew out to see him.

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He said you are going through topical steroid addiction, which is just where your skin becomes addicted to your topical steroids and you are going to need to go off of these.

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He said it's not going to be pleasant.

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It's going to be a long withdrawal period we don't know exactly how long.

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So this was Dr Marvin Rappaport.

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He is the authority on topical steroid withdrawal syndrome.

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Back then it was being called red skin syndrome, but they decided it was very specifically now needing to be labeled topical steroid withdrawal syndrome.

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So I went off topical steroids in 2009.

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I went off topical steroids in 2009.

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And for two years I was absolutely housebound, bedridden.

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What happened to me?

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My whole body.

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Because your skin this is what we're just finding out, or just really coming to realize.

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Your skin is one organ.

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So just because you have a bunch of inflammation on your eyelids and you've used a lot of topical steroids there, you can have a reaction over your entire body because your skin is all connected.

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So because I had had my eczema spread from my eyelids all the way down my neck, all over my body, and I had used topical steroids all over my body, when I went into withdrawal, my full body reacted with the biggest inflammation that you could possibly get.

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My skin was coming off in flakes, it was red, it was oozing, it was impossible to be touched.

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I couldn't wear clothes.

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That's why you're housebound when you're running around without any clothes on, because clothes hurt your skin.

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The itch is described in topical steroid as a soul-sucking itch.

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The itch was insane.

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It was bone deep.

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Now when I get a mosquito bite now or I have a little you know itch of some kind now it's like, oh, that isn't even an itch.

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It's like the difference between swimming 10 400 IMs and swimming you know 10, 25s on five minutes.

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There is a huge difference between topical steroid withdrawal itch and this kind of normal itch.

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So it was a really horrible place.

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The mental health issues that come from topical steroid withdrawal syndrome are many, many.

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The good news is that after a couple of years I began to have something called you know where you would flare and then you would heal.

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So I went through several years after that where I would have quiet periods, my skin would kind of be healed up and then I would have another flare and it would be very itchy and my skin would be cracked and bleeding and dry.

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There were probably about the first five years where I never even took a photo of myself because it was so ghastly and so horrible than I wish I had, because there are a lot of people now you know again, this is 15 years ago there are a lot of people now that take a lot of pictures if you're interested.

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But I wanted to tell my story because there are a lot of swimmers have itchy skin.

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They have a response to something either with the chlorine, with the dry winter itch with goggles around their eyes.

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But please just you know find a different way than topical steroids.

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Topical steroids are labeled that they are only to be used a very short amount of time.

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Sometimes it says two weeks, sometimes it says two weeks, but even two weeks.

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We have people in the organization that helps people with this that have had topical steroid withdrawal for years that only used for two weeks.

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It is not the cure.

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It's actually a very potent substance to put on your skin.

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Years ago, I started an organization called the International Topical Steroid Awareness Network the International Topical Steroid Awareness Network, and it was co-founded by me and Dr Rappaport, and we started it in 2009 unofficially, and then we became a nonprofit and got the 501c3 as a full charity.

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You can check this out at ITSAN I-T-S-A-N, as in International Topical Steroid Awareness Network org.

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I-t-s-a-norg.

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We started that in 2012.

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So we've been around 12 years.

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We are in 41 countries around the world.

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Our Facebook groups have tens of thousands of people going through topical steroid withdrawal.

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It is a devastating condition and it's totally preventable.

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My friend, brie Bonos, just made a beautiful video called Preventable tells the whole story of topical steroid withdrawal.

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But I would not wish topical steroid withdrawal on anyone.

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It is just horrific.

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My flares and healing took me 13 years to be completely healed.

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I've only been completely healed from my skin for three years and, you know, after a while I started getting back into taking some photos.

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But you know, if you've seen photos of me, maybe at a swim meet, or you've seen me at a swim meet, you thought what's going on with Kelly's skin?

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Um, it just is very.

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You get something called elephant skin.

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Your skin is very red, it's very thick, it's um, very itchy and it this condition affects babies, it affects the elderly, it affects every ethnicity and it is completely preventable.

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So I just wanted to put that out here as a warning to swimmers, because we are the ones that have eczema.

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There are many better options than topical steroids and I really, truly believe, as the co-founder of it's San, that one day topical steroids will be completely banned from use.

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That is how awful they are, and we've come so far in 12 years.

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Initially, when we launched our charity, it was, you know, we were considered internet quacks.

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No one had ever heard of it.

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The American Academy of Dermatology threw my husband and I out of a meeting in Southern California.

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Now we are invited to the American Academy of Dermatology meetings.

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The National Eczema Association told us that we were insane.

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Now we're partnering with them.

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They recognize this condition.

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This is really truly something that's real and you know as a love the love that I have for my swimming community.

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If I could just stop one person from using topical steroids.

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If this doesn't resonate with you or you know somebody that has eczema, they don't even have to need, they don't even need to be a swimmer.

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Anyone can get topical steroid withdrawal syndrome and it is just something that I really love everybody to avoid.

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So thanks for listening and hope to see you on the pool deck soon.

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Bye-bye.