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severe eczema: what it feels like
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ben wong was barely five years old when his frequent experiences with dry, itchy skin were diagnosed as atopic dermatitis (ad). this condition would impact every aspect of wong’s life, from what sorts of clothing he could wear, to the foods he could eat, to how he moved his body during a flare-up.
ad is a chronic skin condition that falls under the eczema umbrella. there isn’t yet a consensus on what causes eczema, but it is thought to occur when the body’s immune system damages the skin barrier, resulting in dry, itchy skin. the damaged skin barrier may be severe enough to break and bleed, leaving the patient vulnerable to infection. only in the last few years was it recognized as an autoimmune disease.
eczema is not contagious, although some forms, like ad, are hereditary. approximately 17 per cent of canadians experience ad at some point in their lives.
now a father to two young boys and participating in a clinical trial, he says is “life changing.” wong talked to healthing about growing up with ad and how he learned to advocate for himself.
when were you first diagnosed?
probably as early as maybe five years old, and i’ve been experiencing moderate and progressively more severe [symptoms] until now.
probably as early as maybe five years old, and i’ve been experiencing moderate and progressively more severe [symptoms] until now.
i was diagnosed with atopic dermatitis, more commonly known as eczema. it’s an immunological disease, which means that my immune system is overly sensitive to even the slightest triggers. what usually results is red, scaly skin, itchiness – and i use that in a very broad sense, because when people say red, itchy, scaly skin, they usually [mean something] pretty benign that doesn’t affect their lives. on the contrary, ad can have massive repercussions on all aspects of someone’s life, anywhere from personal, professional, family… everything. it can affect every decision you make.
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what was it like have ad growing up?
i didn’t really notice when i was younger, but as i progressed into high school and university, it became more evident and more impactful on the decisions i made. i guess for me, before i started the treatment that i’m on now, it’s always just been my way of life. for someone who’s struggled with atopic dermatitis all their life, they don’t know what’s out there, they don’t know what kind of hope they can look for and how much better their quality of life can be until they actually do the research and look for different treatment options.
i didn’t really notice when i was younger, but as i progressed into high school and university, it became more evident and more impactful on the decisions i made. i guess for me, before i started the treatment that i’m on now, it’s always just been my way of life. for someone who’s struggled with atopic dermatitis all their life, they don’t know what’s out there, they don’t know what kind of hope they can look for and how much better their quality of life can be until they actually do the research and look for different treatment options.
how did ad impact your day-to-day life when you were a teenager, and in your 20s?
in university i lived alone, i was taking care of myself. but, when i am stressed, i’ll have a pretty extreme flare-up. it complicated my need to study for exams, it made walking to class all the more difficult. when i would interview for a job, i had to be mindful not to scratch myself so often during that 30 to 45 minute interview, because people might see that as unsightly. i had to make sure my face wasn’t all scabbed or scaly and that the skin wasn’t falling off my face while i was talking to them.
in university i lived alone, i was taking care of myself. but, when i am stressed, i’ll have a pretty extreme flare-up. it complicated my need to study for exams, it made walking to class all the more difficult. when i would interview for a job, i had to be mindful not to scratch myself so often during that 30 to 45 minute interview, because people might see that as unsightly. i had to make sure my face wasn’t all scabbed or scaly and that the skin wasn’t falling off my face while i was talking to them.
does that impact your confidence?
that’s an interesting question. not really, because it was so ingrained in the way i live, so i never really thought about it. unfortunately, the public makes light of people with ad or eczema because they think it’s so insignificant. people would make jokes about my skin; they would call me a lizard. they say it in jest, but they don’t understand the impact that it can have on someone. part of [the reason i’m doing] this interview is so the general public can see that these are silent sufferers who have to carry this burden and live their life as normal as possible.
that’s an interesting question. not really, because it was so ingrained in the way i live, so i never really thought about it. unfortunately, the public makes light of people with ad or eczema because they think it’s so insignificant. people would make jokes about my skin; they would call me a lizard. they say it in jest, but they don’t understand the impact that it can have on someone. part of [the reason i’m doing] this interview is so the general public can see that these are silent sufferers who have to carry this burden and live their life as normal as possible.
you said there are certain kinds of clothing you can’t wear.
[someone told me once that] what it feels like to have atopic dermatitis is wearing a sweater made out of a cactus. that’s what it feels like: you’re wearing pins all over your body. so i couldn’t wear wool, i had to wear cotton, i had to buy high thread-count bed sheets. i have to constantly clean, because of all the skin flakes and the dry blood all over my clothes. you have to be very cognizant of your clothes. the neckline around my t-shirts were all torn, because i was ripping at them to scratch my chest and neck. it’s not nice to look at.
[someone told me once that] what it feels like to have atopic dermatitis is wearing a sweater made out of a cactus. that’s what it feels like: you’re wearing pins all over your body. so i couldn’t wear wool, i had to wear cotton, i had to buy high thread-count bed sheets. i have to constantly clean, because of all the skin flakes and the dry blood all over my clothes. you have to be very cognizant of your clothes. the neckline around my t-shirts were all torn, because i was ripping at them to scratch my chest and neck. it’s not nice to look at.
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how do you cope with being constantly itchy and in pain all over your body?
i’ve been asked that a lot. my two young boys have eczema too and all i can do is tell them: put cream on and deal with it. until they come up with a long-term solution — maybe they’ll come up with a cure — you do the best you can.
i’ve been asked that a lot. my two young boys have eczema too and all i can do is tell them: put cream on and deal with it. until they come up with a long-term solution — maybe they’ll come up with a cure — you do the best you can.
it is a lot of independent research, a lot of trial and error. some people journal to see what triggers affect them: weather, food, stress, emotional [states]. it could be anything.
unfortunately, with gps or family physicians, their scope of knowledge is so broad, they don’t really know the struggles that someone suffering with atopic dermatitis may have. so they usually prescribe the same treatments in a cyclical way, like a topical steroid. they prescribe the treatment, you go away, another flare-up happens, you come back four months later, and they prescribe pretty much the same thing.
i went to a walk-in because my ad was getting worse and i asked to see a specialist, and showed him my research. i [knew i] needed to look into these options, otherwise, i’m going to die in 10 years because of complications with my atopic dermatitis.
ad can be fatal?
because i have severe ad, the extreme flare-ups cause exposed, raw skin all over my body. when i went to the dermatologist about 80 per cent of my body had eczema and when you scratch so much, it exposes raw flesh, so your skin barrier is reduced. that means infections can start. in 2019, i had to be hospitalized for [the common bacterial skin infection] cellulitis. other things can happen too — your immune system can [become] compromised. people don’t understand the challenges patients face.
because i have severe ad, the extreme flare-ups cause exposed, raw skin all over my body. when i went to the dermatologist about 80 per cent of my body had eczema and when you scratch so much, it exposes raw flesh, so your skin barrier is reduced. that means infections can start. in 2019, i had to be hospitalized for [the common bacterial skin infection] cellulitis. other things can happen too — your immune system can [become] compromised. people don’t understand the challenges patients face.
[even] quality of sleep — i probably only get four hours of sleep at night because i’ve been scratching all night. that means there’s like skin flakes all over my house, my bed and pillow is bloody because of all the dried blood. i’ve got to be careful what clothes i wear, i have to be careful about certain foods i eat. my interactions with friends and my wife may be limited. and [it affects parenting] too. if i’m having an extreme flare-up, essentially i can’t move. if there are lesions and cuts on my arms, even stretching out my arms [hurts]. every time i move, my skin it hurts. when that happens, i can’t play with [my kids], i can’t take care of them. i can’t take care of the house, i can barely do anything.
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editor’s note: research from the london school of hygiene & tropical medicine found that while there’s limited evidence for overall increased mortality in patients with ad, people with eczema may have a greater risk of death from a variety of health issues compared to people without eczema.
i had no idea that it could get that bad.
again, my case is quite severe — it affects 80 per cent of my body. for those with mild ad [it] can just be an irritant. but i’ve also noticed, anecdotally: a lot more kids have symptoms of eczema lately. i don’t know what it is, but it’s something to look out for in the future for the next generation.
again, my case is quite severe — it affects 80 per cent of my body. for those with mild ad [it] can just be an irritant. but i’ve also noticed, anecdotally: a lot more kids have symptoms of eczema lately. i don’t know what it is, but it’s something to look out for in the future for the next generation.
how frequent are flare-ups?
it depends on the person. but in cases of severe eczema, flare-ups can happen pretty consistently. you’re always on edge, because you don’t know when the next flare-up will be. once a flare-up happens, basically you have cuts all over your body for the next two to three weeks.
it depends on the person. but in cases of severe eczema, flare-ups can happen pretty consistently. you’re always on edge, because you don’t know when the next flare-up will be. once a flare-up happens, basically you have cuts all over your body for the next two to three weeks.
what’s the treatment for eczema?
the most common one is topical steroids, where you use an ointment, and then a maintenance cream to make sure that your skin doesn’t get dry. there’s also ultraviolet light (uv) therapy, where a person gets a weekly 30-second high dose of uv, like vitamin d and stuff, which is purportedly helpful.
the most common one is topical steroids, where you use an ointment, and then a maintenance cream to make sure that your skin doesn’t get dry. there’s also ultraviolet light (uv) therapy, where a person gets a weekly 30-second high dose of uv, like vitamin d and stuff, which is purportedly helpful.
there are also a bunch of clinical trials going on for biologics [biopharmaceutical drugs] that have had life-changing effects for people with atopic dermatitis. i’m on an oral biologic, and it has completely transformed my life: i can i have my life back. i can actually do things around the house. i can take care of my wife and my kids. i don’t have to worry about the clothes i wear. i can take a shower without feeling, like, acid is running down my body.
aren’t biologics for autoimmune disorders?
that’s right. so the fact that i’m taking this biologic means my immune system is suppressed. that’s a small price to pay. but now i have to be very cautious, especially with a pandemic, obviously. i have to be very careful — watch where i am, who i’m around, things like that.
that’s right. so the fact that i’m taking this biologic means my immune system is suppressed. that’s a small price to pay. but now i have to be very cautious, especially with a pandemic, obviously. i have to be very careful — watch where i am, who i’m around, things like that.
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how is it raising kids who also have this condition?
it’s very sad. it’s one thing for me to deal with it — i’m a grown adult, i’ve lived with this all my life, my pain tolerance is quite high now. but with kids, you see them scratching at night. they cry. it breaks your heart because you want to make their life as good as possible, but [this is] their reality as well. you have to teach them to equip themselves with the knowledge that this is potentially going to be their life.
it’s very sad. it’s one thing for me to deal with it — i’m a grown adult, i’ve lived with this all my life, my pain tolerance is quite high now. but with kids, you see them scratching at night. they cry. it breaks your heart because you want to make their life as good as possible, but [this is] their reality as well. you have to teach them to equip themselves with the knowledge that this is potentially going to be their life.
can kids take the biologics?
the biologic hasn’t been approved, even within clinical trials, for kids younger than 12. my kids are four and two right now, so they’re on mild to moderate doses of topical steroids. there may be some options for them to get into a clinical trial once they turn five. the dermatologist i see is great and he’s the one who suggested i participate in the trial. so that’s something i may look into if their eczema continues to progress.
the biologic hasn’t been approved, even within clinical trials, for kids younger than 12. my kids are four and two right now, so they’re on mild to moderate doses of topical steroids. there may be some options for them to get into a clinical trial once they turn five. the dermatologist i see is great and he’s the one who suggested i participate in the trial. so that’s something i may look into if their eczema continues to progress.
now that you’re on biologics, are you feeling consistently better? do you still get flare-ups?
it’s like i got a 180-degree transformation. i may get some itchiness maybe once a week now, as opposed to daily. and i don’t bleed. i don’t have pus coming out of my skin. i take the pill, and 20 minutes [later], all the itchiness is gone. it’s literally transformative. i told my dermatologist to write down in my file [that this] is life-changing. i hope that ontario — and canada— will be able to approve the drug and provide reimbursement to those who need it. because it really is transformative.
it’s like i got a 180-degree transformation. i may get some itchiness maybe once a week now, as opposed to daily. and i don’t bleed. i don’t have pus coming out of my skin. i take the pill, and 20 minutes [later], all the itchiness is gone. it’s literally transformative. i told my dermatologist to write down in my file [that this] is life-changing. i hope that ontario — and canada— will be able to approve the drug and provide reimbursement to those who need it. because it really is transformative.
i just [want] to instil hope in those suffering with severe eczema that there are options out there, and raise awareness to the general public that a lot of people are suffering in silence because they’re taking on this burden and don’t want to bother others.
people generally don’t talk about it because the public doesn’t necessarily take it seriously. it’s like, whatever, it’s just dry skin, deal with it. but no, it’s a lot more than that.
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readers interested in learning more about ad and other forms of eczema, as well as product and treatment recommendations, can check out the eczema society of canada and the canadian dermatology association.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. she can be reached at emjones@postmedia.com | @jonesyjourn
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