Latest / Amplify: A Podcast Powered by Patient Voice Partners / Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family

Transcript

Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  Speaker 3: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:10
  Speaker 3: I'm Ursula Mann.
• 0:12
  Speaker: And I'm Brent Cordy.
• 0:14
  Speaker: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  Speaker 3: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:33
  Speaker 4: Today's episode of Amplify is sponsored by Leo Pharma.
• 0:36
  Speaker 4: Leo is a global research-based pharmaceutical company that is dedicated to advancing the standard of care for the benefit of people with skin conditions, their families, and society.
• 0:47
  Speaker 4: Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and our guest.
• 0:56
  Speaker 4: I'm joined today by my co-host Anne-Marie, and we're going to be talking about, in this series, chronic hand eczema.
• 1:03
  Speaker 4: Anne-Marie, this is a situation I've really been thinking a lot about because it's something that affects people every day on their hands in this case.
• 1:13
  Speaker 4: And eczema is a group of non-contagious, chronic inflammatory skin conditions that is associated with dry, itchy skin and red patches.
• 1:24
  Speaker 4: It comes from a combination of genetic factors, an overactive immune system, and environmental triggers.
• 1:31
  Speaker 4: And it can affect people on their face, hands, neck, inner elbows, and behind the knees.
• 1:37
  Speaker 4: And as mentioned, today we're specifically going to be talking about chronic hand eczema on the hands.
• 1:43
  Speaker 4: And Marie, what are your thoughts when you think about being constantly itchy and how that can be overwhelming and impact life?
• 1:53
  Speaker 2: As I was learning more about this, a few things really, really struck me.
• 1:57
  Speaker 2: The frequency, the severity.
• 2:00
  Speaker 2: And I think when I also learning that it can actually be caused by some of the products being used in our healthcare system.
• 2:09
  Speaker 2: I actually recall, I was a clinician myself for many years.
• 2:13
  Speaker 2: I actually remember now colleagues really struggling with this.
• 2:17
  Speaker 2: And it's just taken me back there.
• 2:18
  Speaker 2: I think I really underappreciated the severity of it and what it might feel like.
• 2:23
  Speaker 4: Yeah, I appreciate you sharing that.
• 2:25
  Speaker 4: And it's one of these things we don't necessarily think about until it's in front of us.
• 2:28
  Speaker 4: And all the more reason I really appreciate today's conversation to better understand what it is like to live with us.
• 2:35
  Speaker 4: And also diagnosis isn't always simple or timely.
• 2:40
  Speaker 4: And this is a chronic condition.
• 2:42
  Speaker 4: There's mixed feedback on how well it can be managed.
• 2:46
  Speaker 4: And to your point, the concept of the environment or work where someone's earning a livelihood and doing good things to help people, particularly in nursing, having it be made worse is really concerning.
• 2:59
  Speaker 4: So I'm excited to dive into today's show.
• 3:02
  Speaker 4: We're delighted to be joined today by Amy Wright, who's going to talk to us today about what it's like to live with chronic can eczema.
• 3:10
  Speaker 4: Amy is also president of the Canadian Association of Neonatal Nurses.
• 3:16
  Speaker 4: She has a clinical role as a neonatal nurse practitioner at McMaster Children's Hospital and is an assistant professor at Lawrence Bloomberg Faculty of Nursing at the University of Toronto.
• 3:28
  Speaker 4: Amy, we're delighted to have you here with us today and thank you for joining us.
• 3:32
  Speaker 4: Thanks for having me.
• 3:33
  Speaker 4: Good to be here.
• 3:34
  Speaker 4: So let's dive in.
• 3:36
  Speaker 4: And if you could take us back in time to what was happening in your life and your world when you started having some symptoms and what did that feel like?
• 3:47
  Speaker 1: So the first time I realized I had some sort of skin condition, I'd actually just flown to New Zealand for a conference.
• 3:56
  Speaker 1: I had just taken on my role as an assistant professor at UFT.
• 4:00
  Speaker 1: And we'd flown to New Zealand, which is a really long flight.
• 4:04
  Speaker 1: And I got to the hotel and realized on my hand that there were this cluster of tiny little blisters in the center of my hand.
• 4:12
  Speaker 1: And I remember looking at it and thinking, whoa, that looks weird.
• 4:16
  Speaker 1: And then kind of dismissed it.
• 4:18
  Speaker 1: I came home, continued to have those blisters, but it didn't really become a problem until the pandemic hit, which was probably six months, eight months later.
• 4:28
  Speaker 1: And I had my daughter, I'd given birth to my daughter, and then the pandemic hit and we were closed down and hand washing like crazy.
• 4:36
  Speaker 1: And so it became really problematic as I experienced skin breakdown resulting from washing my hands repeatedly, doing a lot of care of my now newborn infant, which kept my hands wet all the time.
• 4:50
  Speaker 1: And then the skin breakdown that came with that.
• 4:52
  Speaker 1: If you remember back to that time, we were using Lysol wipes to wipe down our groceries.
• 4:57
  Speaker 1: We were wiping down all of our surfaces.
• 4:59
  Speaker 1: It was just crazy.
• 5:01
  Speaker 1: And then my hand was exposed to so much of that at once.
• 5:04
  Speaker 1: I'd always had dry hands at work in the neonatal ICU.
• 5:09
  Speaker 1: I think a lot of clinical areas, it's very normal to have dry skin.
• 5:13
  Speaker 1: You're inducted into the role with this list of products that might help you on your journey as a nurse.
• 5:19
  Speaker 1: Like use this cream from this store, and that cream is good for that.
• 5:23
  Speaker 1: And so it's very normalized that you have dry, cracked skin, especially in winter months.
• 5:28
  Speaker 1: So I was used to that, but this was a new condition that was actually resulting in regular flare-ups and skin breakdown, which was really painful.
• 5:38
  Speaker 1: And then just having to continually wash my hands, regardless of the breakdown, because I didn't want to get my newborn sick and spread potentially COVID.
• 5:49
  Speaker 1: So yeah, it was really problematic.
• 5:51
  Speaker 4: And I'm gonna come back to the symptoms in a minute that you were traveling as this was happening.
• 5:56
  Speaker 4: Did you seek treatment?
• 5:58
  Speaker 4: Did you say, here's what I need to do for myself, or I want to go see a nurse practitioner or family physician?
• 6:04
  Speaker 4: What did that look like?
• 6:06
  Speaker 1: No, I am a nurse practitioner myself, and so we tend to the running joke is that you'd have to be nearly dying to go to the ER, right?
• 6:13
  Speaker 1: Yes.
• 6:13
  Speaker 1: I certainly thought, oh, this is funny looking.
• 6:15
  Speaker 1: I did my own research eventually when there were these persisting blisters under my skin and figured I must have this particular type of eczema called dishedrotic eczema.
• 6:25
  Speaker 1: I may not be saying that right.
• 6:27
  Speaker 1: But when I came home and it was continuing to persist, and then with the breakdown, I probably, because of COVID, would have delayed treatment even further because we couldn't get into our family doctors initially.
• 6:39
  Speaker 1: But I couldn't see a dermatologist without being referred by my family doctor.
• 6:44
  Speaker 1: So I had to see my family doctor.
• 6:45
  Speaker 1: I was able to get in okay at some point, and maybe I even shared the issue while I was at a routine vaccine with my daughter because they were still doing those appointments.
• 6:56
  Speaker 1: But I managed to see a dermatologist, but those appointments sometimes take a year before you get the dermatologist appointment, right?
• 7:02
  Speaker 1: So I didn't get diagnosed for many years, probably the initial flare-up, just between me waiting and then the pandemic delaying things and then the normal delay of seeing a specialist.
• 7:14
  Speaker 4: And did you also think symptoms would pass at first happened?
• 7:16
  Speaker 4: These blisters popped up.
• 7:17
  Speaker 4: You're like, well, there might be a little bit like, I'm gonna wait.
• 7:20
  Speaker 4: I've had dry hands, I'm not sure.
• 7:22
  Speaker 4: Absolutely, for sure.
• 7:24
  Speaker 1: It was really the persistent breakdown that became intolerable that I was looking for treatment as opposed to a diagnosis.
• 7:31
  Speaker 1: But I was pretty disappointed with the treatment options because it was mostly a steroid cream, and they just said, you will deal with this for the rest of your life.
• 7:40
  Speaker 1: And that was pretty depressing.
• 7:42
  Speaker 2: Wow.
• 7:43
  Speaker 2: Yeah, I was just gonna ask, where did you learn about these treatments?
• 7:46
  Speaker 2: Did you do your own research?
• 7:47
  Speaker 2: Were you referred to somebody to help you go through them?
• 7:50
  Speaker 1: No, I would say the dermatologist offered me two medication creams.
• 7:55
  Speaker 1: One was a steroid and the other was, I believe they call it ointment.
• 7:59
  Speaker 1: I used those initially, and this is probably not great advice, but I do go to help sites sometimes, like Facebook help peer group pages, especially because I had done a lot of homework on this, trying to see if there was a trigger that might be causing flare-up so that I could lessen my reactions to.
• 8:15
  Speaker 1: And I didn't really get any information from the dermatologist.
• 8:19
  Speaker 1: They didn't offer me any advice about lessening my exposure to certain allergens or triggers.
• 8:26
  Speaker 1: And so I did my own homework reading what people's experiences had been online where they cool like thousands of people into one peer network group.
• 8:35
  Speaker 1: And granted, there's lots of information on those pages that are not evidence-based.
• 8:39
  Speaker 1: And I have that clinician hat on that I can discern about what would make sense and what it doesn't.
• 8:45
  Speaker 1: But it was through those pages that I really came to understand the potential triggers that might cause.
• 8:51
  Speaker 1: And so then I tried to do my own sort of elimination of those potential exposures.
• 8:56
  Speaker 1: And I actually found that limiting my hand exposure or my body's exposure to two particular chemicals that are in many hand and skin products that are known skin irritants.
• 9:08
  Speaker 1: When I tried my best to eliminate that from my life, my hand improved easily 90%.
• 9:15
  Speaker 1: And now I still have flare-ups.
• 9:18
  Speaker 1: If ever I'm exposed, especially when I'm in the clinical area, I have to wash my hands a lot.
• 9:24
  Speaker 1: I'm using alcohol sanitizer, which my hand is not horribly opposed to, but it doesn't love it.
• 9:30
  Speaker 1: And so I will have a mild flare-up after every clinical shift, but it's not so bad as it was in the pandemic when I was really exposing myself to these chemicals regularly.
• 9:40
  Speaker 2: Amy, you just touched on something that we talk about a lot on this podcast, and that's the power of patients or people living with a condition.
• 9:50
  Speaker 2: And I think it's a really important note for us to maybe just come back on for a second.
• 9:54
  Speaker 2: We know in virtually every clinical area where we've had these discussions that there are gaps.
• 10:00
  Speaker 2: And often those gaps are filled with people who have empowered themselves through education, through peer support, through just pathways like you've gone through to seek out information that they're not getting through the system.
• 10:14
  Speaker 2: And I think you were very careful with your clinical hat and talking about evidence-based.
• 10:19
  Speaker 2: But I just want to turn it maybe back to you for advice for people, maybe people who don't have the clinical background you have.
• 10:26
  Speaker 2: It's still valid to go to some of these places for information.
• 10:29
  Speaker 2: Do you have a few tips for folks on how to discern what is reputable advice and information when they go to these sites?
• 10:37
  Speaker 2: Because it is a valid place to go and look.
• 10:39
  Speaker 1: Well, I think what I look for is a common experience around a certain trigger, say, or something I want to try, looking for many people saying that they've had a particular exposure cause flare-ups.
• 10:51
  Speaker 1: And I kept seeing these two chemicals, methothia xylone and then another one.
• 10:55
  Speaker 1: They're very long names.
• 10:57
  Speaker 1: I kept seeing these mentioned over and over.
• 11:00
  Speaker 1: And so I thought, oh, well, maybe I will try to avoid those.
• 11:04
  Speaker 1: But I also did my own research on those chemicals and found that they are known chemical irritants.
• 11:10
  Speaker 1: They're known to cause eczema and to irritate skin.
• 11:14
  Speaker 1: And yet they are approved for use in Canada in skin products, and we're all exposed to them regularly.
• 11:21
  Speaker 1: Even top name brands are putting these chemicals in their products.
• 11:25
  Speaker 1: And so it becomes incredibly problematic, not only in the workplace, but every place that I go where I have to wash my hands to the point where I have to carry my own like handmade hand soap around with me in the fanny pack because it's almost like my epi pen.
• 11:43
  Speaker 1: Like I have to use my own soap because every soap is potentially has this chemical.
• 11:48
  Speaker 4: Yeah.
• 11:48
  Speaker 4: Which is it's quite the thought.
• 11:50
  Speaker 4: You had said, just because you work in a hospital doesn't mean your products are safe.
• 11:54
  Speaker 4: And this has impact on nursing retention too, safety in the workplace, which is very significant and has completely different ramifications of people changing their jobs as well.
• 12:06
  Speaker 4: Amy, I'd like to go back to talk about living with this day-to-day, because I think that there are some things on the symptom side which people don't really necessarily recognize or think of top of mind.
• 12:19
  Speaker 4: So we talked a little bit about the itchiness factor, which I'll have uh comment about nighttime in a sec, but the cracked skin, that part also leads to risk of increased infection as well.
• 12:33
  Speaker 4: So we have redness, itchiness, cracked skin.
• 12:36
  Speaker 4: Fistures has come up.
• 12:38
  Speaker 4: Can you tell us a little bit about how that's recognized and what that means to add that into the mix and any other symptoms that come to mind, which people might not really be aware of, which is another added complication in juggling.
• 12:52
  Speaker 4: There's some really painful things, and speaking of which, pain comes up as well.
• 12:57
  Speaker 4: So, what are all the symptoms that you would describe that you don't think people are necessarily aware of when they're dealing with chronic hand eczema?
• 13:04
  Speaker 1: Yeah, so the itchiness for sure, especially at the beginning of a flare, I find it can be really itchy.
• 13:09
  Speaker 1: And so you're constantly itching your hand.
• 13:12
  Speaker 1: That leads to skin breakdown for sure.
• 13:15
  Speaker 1: And then you can end up with my type of eczema, the blisters will come to the surface and open.
• 13:21
  Speaker 1: And so you end up with fissures or bleeding or oozing areas on your hand, whether or not you've taken care of your skin.
• 13:29
  Speaker 1: And then that hurts for sure.
• 13:31
  Speaker 1: Washing them over time hurts.
• 13:33
  Speaker 1: If you've ever put alcohol hand sanitizer on a cut, uh, it really hurts.
• 13:38
  Speaker 1: But when you're in the clinical area, you have to, and so you just have to keep going despite that.
• 13:43
  Speaker 1: And then the hands get really, really dry and the skin starts flaking off.
• 13:47
  Speaker 1: That's unsightly.
• 13:49
  Speaker 1: As I get these dry spots, I can end up with pieces of skin on my table.
• 13:53
  Speaker 1: Like it's gross.
• 13:54
  Speaker 1: And then as you're shaking people's hands, especially during bad flare-ups, it was so embarrassing to go to shake somebody's hand.
• 14:03
  Speaker 1: They don't know what I have and that it's not contagious.
• 14:06
  Speaker 1: Even family members in the neoniddle ICU, I don't look like I have safe hands to shake.
• 14:12
  Speaker 1: And but it's this social norm that we have.
• 14:16
  Speaker 1: And so there's no real way to get out of that handshake.
• 14:19
  Speaker 1: And so that's definitely embarrassing, and you cringe and feel shame about that.
• 14:24
  Speaker 4: Well, I appreciate you sharing that.
• 14:25
  Speaker 4: And I imagine too, nurse going in to treat patients at time, there could be looks or reactions from patients being treated to the very hands that are trying to treat them.
• 14:38
  Speaker 1: Yeah.
• 14:38
  Speaker 1: And then over time, the last thing I was gonna say is that the skin does get thicker over time.
• 14:44
  Speaker 1: I really felt like that was so sad.
• 14:46
  Speaker 1: My hand was really rough and really thick, and I couldn't feel very well.
• 14:51
  Speaker 1: And I thought, here I have these two newborn babies.
• 14:54
  Speaker 1: I ended up with babies just a year apart.
• 14:56
  Speaker 1: And when I touch them, my hand is rough to their skin.
• 15:00
  Speaker 1: And that was like heartbreaking.
• 15:02
  Speaker 1: And now that they're older, when I have a flare-up, they'll say, Oh, why does your hand feel like that?
• 15:08
  Speaker 1: Oh, you scratched me when you touched me.
• 15:10
  Speaker 1: And that's heartbreaking.
• 15:12
  Speaker 1: That's really hard, but it is what it is.
• 15:15
  Speaker 4: Of course.
• 15:15
  Speaker 4: And the itchiness, interestingly, because I've also seen this, gets worse at night.
• 15:23
  Speaker 4: And so sleep is impacted.
• 15:25
  Speaker 4: Is that something that came into play as well for yourself and others you've had conversations with?
• 15:32
  Speaker 1: I would say it did at the beginning when I hadn't started trying to avoid triggers.
• 15:38
  Speaker 1: It was really bad for sure.
• 15:40
  Speaker 1: It was very itchy, so itchy.
• 15:42
  Speaker 1: I'm not sure if it would wake me up.
• 15:44
  Speaker 1: I'm a very good sleeper.
• 15:46
  Speaker 1: But it was certainly difficult.
• 15:49
  Speaker 1: But I also like my skin would catch on certain materials, like the tiniest little cut or something that gets caught on like microfibers on your sheets and things that doesn't feel nice.
• 16:00
  Speaker 1: And it's like nails on a chalkboard.
• 16:02
  Speaker 1: And then it, yeah, it can catch skin and pull, and then you're in pain from that.
• 16:07
  Speaker 4: That's a lot.
• 16:08
  Speaker 4: Sometimes in passing, people will say, Oh, I just have dry hands and stuff.
• 16:12
  Speaker 4: But this is so much more intense and life-changing.
• 16:16
  Speaker 4: Are there any other symptoms that come along with this that we haven't talked about?
• 16:19
  Speaker 4: We've talked a lot about some significant ones.
• 16:21
  Speaker 4: Is there anything else that comes to mind?
• 16:24
  Speaker 1: Well, I would mention that the treatments putting on the steroid creams, like at the beginning, you tend to put these on in on thick at bedtime.
• 16:34
  Speaker 1: And I would wear gloves, actually, like gloves to bed with this cream lathered on my hands, because otherwise you get this oily residue everywhere.
• 16:44
  Speaker 1: And that was extremely problematic.
• 16:46
  Speaker 1: So that you really can't use these products unless it's at bedtime when you're no longer going to be touching things.
• 16:53
  Speaker 1: But it also is weird to go to bed with gloves on.
• 16:55
  Speaker 1: Yeah, and I would say just the soap exposure or like the trying to avoid irritants is really problematic if you think of everything that you allow to touch your skin, all the products that we use from makeup to toothpaste to your shampoo and conditioner.
• 17:10
  Speaker 1: And having babies, all of the things that I put in the bath for them, their shampoo, their body cream, even they really love bath bombs in the bath.
• 17:21
  Speaker 1: And I have to be really careful of what type of bath bombs they can have.
• 17:24
  Speaker 1: And so when people gift them fun unicorn bath bombs, I'm like, I can't actually put my hands in that water and then wash your hair for you then.
• 17:33
  Speaker 1: Even washing the dishes.
• 17:35
  Speaker 1: Thankfully, my husband has willingly taken that on, but I can't wash the dishes regularly.
• 17:40
  Speaker 1: I have to use a very weak sort of baby dish soap that won't irritate my hands, but it means that I can't really clean dishes that well because the soap isn't like the strong stuff, like Dawn.
• 17:50
  Speaker 1: That has been an issue too, for sure.
• 17:52
  Speaker 1: And then having to carry around my soap everywhere.
• 17:55
  Speaker 4: This is really interesting to map out and be thoughtful of everything in the environment.
• 18:01
  Speaker 4: And also on the treatment side, you mentioned sleeping with gloves and having the steroid cream.
• 18:07
  Speaker 4: I understand that the treatments are not that great.
• 18:10
  Speaker 4: I have experience where they can work for a while and then they don't have the same efficacy.
• 18:15
  Speaker 4: But with the delay in getting the diagnosis and then also potentially you not seeing someone for a long time to get that diagnosis, treatment is subsequently delayed.
• 18:25
  Speaker 4: But then even it sounds like when people get to treatment across the spectrum, results are not where we'd like to see them.
• 18:33
  Speaker 4: So, what are your thoughts on where things are at in management gaps in addition to lifestyle changes?
• 18:40
  Speaker 4: What would we like to see in terms of improvements?
• 18:44
  Speaker 1: I'm a health provider and I see it often that we're so reactive in our healthcare.
• 18:48
  Speaker 1: And I think being proactive and preventative is the biggest thing we can do, the most meaningful thing.
• 18:55
  Speaker 1: So removing known irritants, and I'm not saying everybody has different causes for eczema.
• 19:02
  Speaker 1: I'm not saying everybody that will solve the problem for everyone, but I think it's a good step to take when we know these chemicals irritate skin and can cause eczema.
• 19:11
  Speaker 1: Remove them.
• 19:12
  Speaker 1: We shouldn't have them in our products.
• 19:14
  Speaker 1: They shouldn't be so widespread, first of all.
• 19:16
  Speaker 1: I think other treatment options would be great.
• 19:19
  Speaker 1: The dermatologist I saw had no recommendations for potential triggers that were causing flare-ups.
• 19:25
  Speaker 1: Provided me with several different creams samples that I didn't find effective, actually.
• 19:30
  Speaker 1: And again, it was through these Facebook sites that I found a brand of cream that everybody raves about.
• 19:36
  Speaker 1: And that one I use and I've let others know that we love it.
• 19:40
  Speaker 1: And that helps keep your hands from getting too dry.
• 19:43
  Speaker 1: And then the dryness really is when the cracking and all that start.
• 19:47
  Speaker 4: I appreciate the cycle through.
• 19:49
  Speaker 4: Anne Marie knows I faced this with baby.
• 19:52
  Speaker 4: It wasn't on hand, but it was on face.
• 19:54
  Speaker 4: And I racked up a $1,500 bill trying every cream in the world, none of which worked.
• 20:00
  Speaker 4: So it's a really frustrating situation to be trying to find something that works to reduce what's happening, not have flares.
• 20:08
  Speaker 4: And meanwhile, managing everything you described, the embarrassment, the stress, the anxiety that comes with it as well.
• 20:18
  Speaker 4: It goes hand in hand as we're trying to get things better.
• 20:22
  Speaker 4: So I would love to see improved control for everybody based on what you described.
• 20:28
  Speaker 4: This is impacting people daily in their personal life and in their work.
• 20:33
  Speaker 2: I think we started this episode.
• 20:35
  Speaker 2: I was thinking about the workplace setting and how difficult this was.
• 20:39
  Speaker 2: But Amy, you've really fleshed out a very different perspective for me dealing with your own children and touching your own children.
• 20:46
  Speaker 2: Wow.
• 20:47
  Speaker 2: I think every parent can connect with that, what that must feel like.
• 20:52
  Speaker 2: How old are your children now?
• 20:54
  Speaker 2: Six and four.
• 20:55
  Speaker 2: And do you have concerns?
• 20:57
  Speaker 2: Are there genetic predispositions to these sorts of things?
• 21:00
  Speaker 2: Are you thinking about what it might mean for them?
• 21:03
  Speaker 1: Yeah, for sure.
• 21:04
  Speaker 1: Actually, my daughter is already coming home with really irritated hands.
• 21:09
  Speaker 1: And I've thought about how do I replace without her having to carry soap herself, which I don't want her to have to do.
• 21:17
  Speaker 1: But like, how can I replace all of the soap that she's exposed to in her school?
• 21:21
  Speaker 1: Right?
• 21:22
  Speaker 1: All day she's washing her hands with their products and she's coming home with really red, irritated hands that clear up every weekend because she's not using those soaps.
• 21:31
  Speaker 1: Yeah.
• 21:32
  Speaker 1: But it's not as easy to give a six-year-old a fanny pack and say, use this soap every time, right?
• 21:37
  Speaker 1: It was such a mind shift to get myself used to that and not automatically going for the soap at the stall, but it's the realities.
• 21:46
  Speaker 4: And have you started having some thoughts and considerations for conversations with her to prepare her emotionally?
• 21:52
  Speaker 4: You mentioned everything you felt in your personal life with the reactions people have.
• 21:58
  Speaker 4: As a mom, I can understand.
• 21:59
  Speaker 4: And the fear of anybody reacting to our own child like that.
• 22:04
  Speaker 4: What are her thoughts and what have some conversations been on that front?
• 22:08
  Speaker 1: I haven't actually thought about the kids.
• 22:11
  Speaker 1: She's still so little.
• 22:12
  Speaker 1: I don't know if they notice that about each other.
• 22:14
  Speaker 1: But certainly that will be something as she gets older that people will notice if she has an issue.
• 22:20
  Speaker 1: But I have taught her make sure you rinse all the soap off if you've got it on your wrists, even to wash it all off.
• 22:27
  Speaker 1: Put water in your hand first before you put the soap on, because that also helps make our hands less irritated.
• 22:33
  Speaker 1: Dry gently.
• 22:35
  Speaker 1: She's sticks and she uses the towel.
• 22:37
  unknown: Right.
• 22:37
  Speaker 1: I'm like gonna irritate your skin.
• 22:39
  Speaker 1: He's getting those hands dry.
• 22:40
  Speaker 1: Oh, yes.
• 22:41
  Speaker 1: I'm like, dry gently, right?
• 22:43
  Speaker 4: Well, and also on that front, with regards to her getting ready for school and what that looks like, it's so important that she feels comfortable approaching other people and being part of it.
• 22:57
  Speaker 4: One of the things that we talk about on the show is how to better react, or what is a maybe a kind reaction?
• 23:04
  Speaker 4: And I'm interested in your thoughts seeing and hearing what you faced.
• 23:08
  Speaker 4: What would you say to somebody that doesn't have chronic candeczema themselves, but they come across somebody that has chronic candeczema?
• 23:15
  Speaker 4: It might be a nurse and they're seeing quite red hands with open wounds.
• 23:20
  Speaker 4: What do you wish people had perhaps asked you or said to you instead of perhaps some of the reactions that they give and not saying anything?
• 23:29
  Speaker 4: Is there a kind way for somebody to ask and engage you about conversations about your hands to learn what's going on?
• 23:37
  Speaker 1: I suppose there's a kind way to ask.
• 23:39
  Speaker 1: I think if people are aware that it's pretty prevalent, especially amongst health providers, then they may feel less scared of it because it isn't something that is contagious.
• 23:49
  Speaker 1: Yeah, and our hands are likely worse because we're doing our best to make sure they're clean.
• 23:54
  Speaker 1: So there's that.
• 23:56
  Speaker 1: I do think if people notice in their workplace and they have any position of power, helping their colleagues advocate for themselves is really important.
• 24:04
  Speaker 1: Going the distance to try and support them with better product access, maybe they need a little bit of an adjustment in how they work.
• 24:14
  Speaker 1: The neonatal unit is really hard because there's just so many stages of hand washing.
• 24:19
  Speaker 1: But sometimes I think if you were able to do less, have your hands wet less and not have to wash them as much, you may do better.
• 24:27
  Speaker 1: And so there may be better clinical areas.
• 24:29
  Speaker 4: And what's your range, Amy?
• 24:31
  Speaker 4: What does hand washing in an average hour look like for you?
• 24:34
  Speaker 4: What's the number?
• 24:35
  Speaker 1: Well, because I'm a nurse practitioner, I don't do as much patient hand-on care.
• 24:40
  Speaker 1: I'm not sure I could actually be a neonatal bedside nurse with this condition because of how often they wash their hands.
• 24:47
  Speaker 1: We call them the zones of plead.
• 24:49
  Speaker 1: And you go from the nurses station to the bedside table where you're setting up for your baby and you have to wash before you get there.
• 24:56
  Speaker 1: And then you wash again before you go into the baby and you do any hands-on care.
• 25:00
  Speaker 1: And then when you leave that environment and you need to go hit a call bell at another baby's bedside, you're washing your hands again between every single call bell, between helping every set of parents, maybe with positioning their babies or helping them feed, even the hands-off care that I might do, because I go and I assess babies and I will look at their monitors, but I write orders and read notes and write notes, and so my care is more at the computer actually some days.
• 25:27
  Speaker 1: And so my day, I would say easily 20 times an hour, and that's the hands-off.
• 25:33
  Speaker 1: And you're bouncing between you can't always use alcohol sanitizer because if you're changing a baby's diaper, you have to go wash your hands with soap and water as well, right?
• 25:41
  Speaker 1: So there's a lot of soap and water washing that occurs, and then lots of glove use, and we're washing our hands after every time we take gloves off.
• 25:50
  Speaker 2: Can we maybe pick up a little bit on the advocacy?
• 25:53
  Speaker 2: You'd mentioned the importance of advocating for yourself and for your colleagues.
• 25:57
  Speaker 2: It sounds like you've got experience now advocating both in your workplace and now at your child school.
• 26:04
  Speaker 2: What does advocacy look like for you and what have you experienced as you've gone down that path?
• 26:10
  Speaker 1: Right.
• 26:10
  Speaker 1: So I went and saw the occupational health nurse at the healthcare facility I work at and asked about product availability, alternative products to what are hanging in the unit, and they offered me gentler product options.
• 26:26
  Speaker 1: It is problematic, especially my role.
• 26:29
  Speaker 1: I can be called to all different bedside areas.
• 26:32
  Speaker 1: The nurses tend to work in one area, and so I could be across the whole unit, I could be into labor and delivery, I need to wash my hands before I eat my own lunch, so I need soap in the break room.
• 26:41
  Speaker 1: So the occupational health typically gives you your soap can and you put it where you're most likely to wash your hands, and then you have to use that through the day, but it just doesn't work to have this big soap can that I have to bring with me every place that I go in the unit.
• 26:56
  Speaker 1: And so that's hard.
• 26:57
  Speaker 1: And they didn't have products that my hands wouldn't react to, actually.
• 27:02
  Speaker 1: The availability of products is problematic.
• 27:05
  Speaker 1: Thankfully, in working through my role with the Canadian Association of Neonale Nurses, and we've been working with the acute care neon nursing group as well in Canada, and we've done a study on that I'm sure you're sharing in this series about nurses' experiences with chronic hand eczema.
• 27:21
  Speaker 1: And it has been honestly, this is the dream, is actually doing things like we're doing now, is actually advocating on a grander scale to getting the word out about how to prevent, but also getting the word out to our organizations asking you to please provide us with safe products so that we're not leaving our clinical areas and our clinical jobs that we love because of skin breakdown that really makes it impossible for us to stay there.
• 27:47
  Speaker 1: Definitely.
• 27:48
  Speaker 1: Yeah.
• 27:48
  Speaker 1: So I think at a policy level, we've been able to advocate and send letters to advocacy or nursing interest groups as well as government level that impact health policy at provincial and federal levels.
• 28:01
  Speaker 1: And I think that is the key.
• 28:02
  Speaker 1: It's really about preventing as much as possible and getting the dollars to the research areas to have better prevention, better treatment options, but also knowledge across not just nurses, but every large organization that provides skin products to the public, right?
• 28:20
  Speaker 1: Is like knowing what you're purchasing and that it might be a cheaper option, but you're really harming people as you provide those products.
• 28:28
  Speaker 1: So yeah, I've been really happy to be in this role and advocate as much as I can.
• 28:33
  Speaker 4: This is so important and really shedding a light on what is this like to live in your skin, but be dealing with this and what does it feel like and what are the symptoms and everything you described on the embarrassment factor and what happened in real situations is so important.
• 28:51
  Speaker 4: And I want to thank you for sharing that.
• 28:53
  Speaker 4: There's also an economic challenge and an economic burden to individuals, which impacts people's lives and plays into the advocacy that we were just recently talking about.
• 29:02
  Speaker 4: And I'm thinking back to your description of taking care of your little ones.
• 29:07
  Speaker 4: This can mean that it's impacting ability to do your own life, air quotes.
• 29:13
  Speaker 4: But also potentially nurses are not just changing jobs, but having to take time off work.
• 29:18
  Speaker 4: Not because they don't want to work, but they're literally like, I need to take rest time.
• 29:23
  Speaker 4: Like I'm in so much pain hand washing.
• 29:26
  Speaker 4: This isn't working.
• 29:27
  Speaker 4: And interested if you could talk a little bit about the economic side of individuals and what you've seen and heard and how that's playing into information of the report that got worked on and also advocacy considerations.
• 29:42
  Speaker 1: Yeah, no, it's definitely an economic barrier, not just for the products that you have to buy that are not prescription necessarily.
• 29:49
  Speaker 1: So they're not covered by benefits.
• 29:51
  Speaker 1: And like I mentioned, the wide range of products that touch our skin that impact us from laundry detergent to dish soap to shampoo, hair conditioner, makeup.
• 30:01
  Speaker 1: But certainly skin takes a while to heal, right?
• 30:04
  Speaker 1: And if you're constantly breaking down to the point where it's too painful to wash your hands, or you're now a risk of potentially getting your hands infected or infecting others with organisms that you can't clean off your hands because your hands are so badly damaged, you have to take time off work.
• 30:21
  Speaker 1: You have to take time off work for your skin to adequately heal.
• 30:24
  Speaker 1: And that takes a long time each time.
• 30:27
  Speaker 1: Flare-ups can last a month or so if you've been exposed and to a trigger, and if that's the cause of your eczema.
• 30:36
  Speaker 1: Some of this isn't even trigger-based, and you may just have horrible eczema constantly.
• 30:42
  Speaker 1: And so, yeah, you're constantly in this cycle of go work, ruin their hands, and now take time off so that I can heal and before I can go back again.
• 30:52
  Speaker 1: It's terrible.
• 30:53
  Speaker 1: It's bad for employers for sure.
• 30:55
  Speaker 1: It would cost a lot of money and then trying to replace those people as they're off sick every time.
• 31:00
  Speaker 1: And then eventually, I think folks just decide they can't do it anymore and then they have to leave the workplace.
• 31:06
  Speaker 1: And that in this day and age is we can't afford that, right?
• 31:09
  Speaker 1: We need to keep trained nurses at the bedside as much as possible.
• 31:15
  Speaker 4: Definitely.
• 31:16
  Speaker 4: I think that's so important and also what people want for themselves too.
• 31:22
  Speaker 4: So this has really been very insightful to help share information on what it's like.
• 31:29
  Speaker 4: But I hope for those listening also the permission to seek treatment or understand that it's okay to go ask more questions.
• 31:37
  Speaker 4: And perhaps we can start to shorten that window for diagnosis and hopefully things continue to get better on the treatment side.
• 31:45
  Speaker 4: I really appreciate your description about a flare could last time period.
• 31:50
  Speaker 4: It could be a week, a month.
• 31:52
  Speaker 4: It could be that someone is just living in it all the time.
• 31:55
  Speaker 4: They don't even get a break and a downtime end from that.
• 31:58
  Speaker 4: And then the impact of that on life and work and economics plays into that as well.
• 32:03
  Speaker 4: So thank you for this incredible conversation.
• 32:06
  Speaker 4: It's given me a lot more to think about.
• 32:09
  Speaker 4: I'm interested in with all of your amazing hats that you wear on the work front.
• 32:14
  Speaker 4: And personally, what are you most excited for that's up around the corner for you?
• 32:20
  Speaker 4: In life?
• 32:21
  Speaker 4: Yes.
• 32:22
  Speaker 4: Oh.
• 32:23
  Speaker 1: Summer?
• 32:24
  Speaker 1: Yeah, I think I'm looking forward to some good quality time off with the kids and doing some fun activities.
• 32:32
  Speaker 1: I think this weekend we're gonna go to a water park and that'll be fun.
• 32:36
  Speaker 1: Just some time off to relax and enjoy being together.
• 32:40
  Speaker 4: That sounds lovely.
• 32:41
  Speaker 4: That's awesome.
• 32:41
  Speaker 4: What are some of the activities that your kids are in that they love taking you on to do the most?
• 32:46
  Speaker 1: Oh, swimming for sure.
• 32:48
  Speaker 1: And they love their indoor playgrounds with all the climbers.
• 32:51
  Speaker 1: My four-year-old is just an incredible climber, climbs over everything.
• 32:55
  Speaker 1: And so those indoor playgrounds have been great.
• 33:00
  Speaker 1: They love the park, but the indoor playgrounds are all about climbing.
• 33:03
  Speaker 4: That's very cool.
• 33:04
  Speaker 4: Do they get this from you, Amy?
• 33:05
  Speaker 4: Are you a climber?
• 33:06
  Speaker 4: Are you climbing with them as well?
• 33:08
  Speaker 1: I'm not.
• 33:09
  Speaker 1: I think I shed my climbing era way back when.
• 33:12
  Speaker 1: Now I just have to watch and fear as they're climbing way high up on the structure.
• 33:18
  Speaker 1: Or not watch.
• 33:21
  Speaker 4: That's incredible.
• 33:22
  Speaker 4: Well, I wish you lots of fun watching the climbing because I know those kids grow up so fast, but it's a lot of fun moments to watch them as they're having a lot of fun.
• 33:31
  Speaker 4: So enjoy the climbing moments and fun time with them over different breaks.
• 33:36
  Speaker 4: And thank you for this fantastic conversation with us today and joining us to talk about chronic handicazim and sharing everything that you did.
• 33:43
  Speaker 4: It's really appreciated.
• 33:44
  Speaker 4: Thank you so much for giving me the opportunity to share and to advocate.
• 33:48
  Speaker 4: I really appreciate it.
• 33:50
  Speaker 4: And special thanks to sponsors for today's episode of Amplify Leo Pharma.
• 34:00
  Speaker 5: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 34:05
  Speaker 5: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 34:12
  Speaker: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 34:18
  Speaker: Visit patientvoicepartners.com to sign up or learn more.
• 34:23
  Speaker 5: If you're a clinician, advocate, innovator, or system leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 34:34
  Speaker 5: You're also welcome to join anonymously if preferred.
• 34:37
  Speaker: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 34:43
  Speaker 5: Until next time, stay connected.
• 34:46
  Speaker 5: Your voice matters.