Episode 35: Brilliant new ideas for beating eczema from eczema parents

The winners of the 2023 Big Ideas for Eczema contest share their novel ideas and how they came up with them.  Our citizen scientist winners are Elizabeth Shores, Hannah Mitchell and Armando de la Libertad.  Would you try these ideas?   Read more about their ideas here. (If you like our podcast consider supporting it with a tax deductible donation.) Read the transcript.

• Transcript

  [00:00:25] Lynita: Hello and welcome to the podcast. Today we are talking to the winners of the big Ideas for Eczema Contest from 2023. It is an international contest to award patients and parents on their ideas for eczema research, with the hope to one day find a cure, or ease the suffering of people living with eczema. And if you have a good idea please share it with us in the Big Ideas for Eczema contest of 2024. Go to www.parentsforeczemaresearch.com/bigideas. But right now, we're going to speak to the three inspirational winners from last year's competition. They are: third place, Amando De La Libertad; second place, Hannah Mitchell; and first place, Elizabeth Shores. Thank you for joining us today.

  [00:01:14] Mando: Thanks for having us.

  [00:01:15] Elizabeth: Thanks

  [00:01:15] Hannah: Thanks for having us.

  [00:01:18] Lynita: The first thing I want to ask all of you is why you entered the contest and what your motivations were. Hannah. Would you like to share your story?

  [00:01:26] Hannah: Yeah. So about a year ago I was in the thick of having a child with moderate to severe atopic dermatitis. I remember sitting in myself for a really long time thinking, is she going to reflect the challenges that I had growing up with severe eczema?

  And so during one of my internet deep dives of trying to find new research, new cures, I came across a patient caregiver outreach program that was created by the Global Parents for Eczema Research, and I remember listening to the podcast of other parents speaking about their experiences.

  And so I reached out because I was going through what I would call like a caregiver burnout at that time. And it just opened my eyes to, caregiver support for parents who are going through watching their child have moderate to severe eczema. And the more I got into it, the more I started looking up what GPER had to offer. And it was eye-opening to see the last year's contest, what worked for other parents, what the new current research is out there. And that's why I decided to enter and to my surprise, I one second place, which is crazy to me. And it was

  so interesting to read everyone's response.

  [00:02:53] Lynita: So Hannah, you come from both perspectives. You are both a sufferer and you have a child who's suffering from eczema.

  [00:03:02] Hannah: Yeah, it was tough. When I was young, no one even knew what it was and when she was diagnosed, my heart hit the floor because I immediately thought that it was going to mirror exactly my experience. So, it kind of took my breath away to see all of what's happening in the past five years, but I just wanted to get it over to potentially a cure.

  [00:03:30] Lynita: Fingers crossed. And Amando

  [00:03:34] Mando: You know, I've been around the GPER organization for quite a while and am committed to finding answers and continuing the search until the suffering related to eczema is a thing of the past. So, that was my motivation.

  [00:03:50] Lynita: And Elizabeth.

  [00:03:51] Elizabeth: Maybe some of your listeners can relate to my experience with eczema prior to having a baby with it. Is that you thought it was just itchy skin and oh, how wrong I was. Once I had a baby diagnosed with severe eczema, I learned that there's this secret underground club of caregivers full of trauma themselves, seeing our children suffer.

  With eczema, which is so much more than just itchy skin, it cascades into lack of sleep, lack of hitting milestones because the child just cannot focus on anything other than the intense suffering that they're going through and how it's chronic, 24 7, how it impacts your family, your family planning for future children, all the things.

  And also maybe like many listeners you would do anything to stop it. So I found myself going down such deep internet rabbit holes. Um, every blog post, every miracle cure that popped up, I would buy it. I'll never forget I had a babysitter I hired who had it as a child. And she told me it felt like a bunch of fire ants were constantly biting her. And that just broke my heart. And I thought there has to be another way.

  I'm not a scientist, but I am an MBA business person, so I like data and I came across um, GPER's Facebook page and really liked your data driven path towards finding a forever cure for

  eczema. And that's how I landed here. It was a quest to reduce chronic inflammation in eczema sufferers bodies, in the hope that what seems to have helped my child could maybe help someone else in the future.

  [00:05:26] Lynita: thank you. I firmly believe that this is where new discoveries are going to come from because only we understand what it's like to live 24 7 watching suffering and it's got to be changed. Tell me what your idea is..

  [00:05:43] Elizabeth: Absolutely. So my submission was placing of eczema patients on. PEMF Mats. So P E M F stands for Pulsed ElectroMagnetic Frequencies. And it's basically as simple as using targeted magnetic forces to help heal chronic inflammation in the body. And what turned me on to this was some article about how NASA astronauts actually used PEMF mats to reacclimate their bodies when they returned from space back to earth's atmosphere, and a light bulb went off in my head and I thought, oh my gosh. If it works for NASA scientists, it's gotta work well enough for my baby. And so I dove into the research and luckily this is not a new technology.

  However, this is a novel application of the technology. So, PEMF mat therapy has been used for years. It's been a part of over 5,000 scientific studies but I've never found any significant studies say for a few small ones that attacked eczema. So I began my own study where I would breastfeed while the PEMF mat was turned on. And I would go on and off weeks. I wanted to see if this had a measurable impact. And on the weeks where he had consistent exposure to the PEMF therapy, his inflamed, infected skin would not be so intense. On weeks where I skipped it, they would really flare back up. And I tried to keep everything the same, and it seemed to have a measurable impact. And I thought, oh my gosh, this could be the way. So now a year and a half later, I would call his eczema managed.

  And so I would love to see this studied deeper and that is the nature of my submission. PEMF mats. We'll see where it goes.

  [00:07:23] Lynita: Wow, that is sSo fascinating that something so non-invasive could have an impact on eczema. And I also love that you've done it as an experiment. I'm going to have to Google it myself now.

  [00:07:38] Elizabeth: For sure.

  [00:07:39] Lynita: And Hannah, please tell us what your idea is.

  [00:07:42] Hannah: yeah, so my idea was to use UVB Phototherapy as a safe and effective treatment for infants when they are high risk of developing atopic dermatitis. So for me personally I had a flare a couple years ago. My eczema had been manageable for many years prior to that, so it was either go down the biologic route or try UVB phototherapy. UVB Phototherapy is known to heal the skin in a different type of way than other light therapies out there. And within two months, I've noticed huge changes. The skin was more supple. The barrier, you can tell, was a little bit stronger. And I thought, why would they not use this for children who would present as high-risk in their infancy to develop atopic dermatitis?

  I have eczema. My husband had it in his adult years. The chances, they told me, that my child would have it was high and on the top of my mind immediately when I got pregnant, I feared that my child would have eczema.

  So I started researching and I asked, all of the dermatologists that we had appointments with if there was a way to better isolate what infants would be higher risk of atopic dermatitis when they're babies. And I realized that there was not that much research out there.

  I think that this would be a good way to lessen severity of atopic dermatitis for them later on in life if they were treated with UVB Phototherapy right when they're born, just like kids with jaundice they put you under phototherapy lights. This would be a very similar approach except it would be targeted towards children who are high-risk for developing atopic dermatitis. So this would just be a way to nip it in the bud, kind of in a way that it would help them build their microbiome diversity at a younger age so that they are able to, be normal and not have the effects of severe atopic dermatitis later on in life.

  [00:09:56] Lynita: I really like that your study is safe. It's been tested on kids, there is research about the technique, particularly as you're suggesting it for kids that haven't yet developed eczema but might.

  [00:10:08] Hannah: Yeah, I think that there's potential there to maybe have a generation of children without atopic dermatitis. That would be so... Like what we all prayed for to be quite honest.

  [00:10:21] Lynita: Yeah. Yep. Um, My oldest child has eczema, and his eczema got a lot worse while I was pregnant. And I remember thinking, what am I doing? Risking this for another child. So I understand the anxiety of that pregnant journey. Thank you so much, Hannah,

  Amando! You always have the most wonderful ideas and I love that you don't stop looking for answers.

  [00:10:46] Mando: Yeah, well my daughter who is 13 and who suffered from extreme eczema between the ages of three and six especially really motivated me to continue searching. My idea is eczema prevention via the administration of what's called FMT. This is fecal microbiota transplantation to pregnant women who will bear children with a high probability of having eczema. The idea is to use FMT as a means for cross-generational transmission of donor bacterial strains to normalize the gut microbiota of the infant or possibly even the fetus. and the strains of bacteria can even persist for five years after treatment.

  So, there's one study that says there's a 75% chance of inheriting eczema. And so that's how you might identify expecting mothers that would be in a clinical trial, for example,

  And then there's the microbiome, which are all of these microbes on the skin and in the respiratory system and in the gut, which have a lot to do with the development of the immune system and protecting us from pathogens and creating a barrier through the epithelial barriers.

  And you know, the opposite of that. we know that when the. the balance of microbes are disrupted then you can have runaway Staph colonization or infection or even susceptibility to other diseases. And so, what if one could take the microbiome of a donor and we could transplant that to expected mothers and then pass that along to the infant either before or during birth. Um, There's a lot of research to say that that works for other ailments. As far back as the three hundreds a Chinese researcher did this, German soldiers during World War ii, and now there's a treatment that's FDA approved. And along with that clinical trials of FMT use on mice and on people has been proven to reduce inflammation in eczema. And because we know that the mother's microbiome can be transmitted through the birthing process. This neonatal seeding could be tried for eczema prevention, I think.

  [00:13:16] Hannah: I mean, I would say right off the bat that if we wanna mainstream poop pills, If that's gonna be the new direction I'd be the first on board to take that. I would be in the clinical trials, like let's go. If you knew all the things that eczema parents would have to go through, And I just wanna say that that was a fantastic idea.

  [00:13:37] Lynita: I wasn't involved in the judging of this competition. But I do remember hearing a comment about Amando about your submission going:The idea is great, but that might be challenging to study because the last people we do tests with are pregnant women. So it's really interesting that both you mothers of children with eczema, were all on board.

  [00:14:02] Mando: I'm excited about the possibility that this might be tried someday and, there's some, hope there for prevention.

  [00:14:09] Lynita: I'm really fascinated with what's going on with the microbiome at the beginning of life. Because we're not born with eczema, so what happens in those early months that leads us down this path? So thank you for thinking about it broadly and sharing your idea with us today.

  My other question for all of you is what your hopes are. I'm gonna start with you first, Hannah,.

  [00:14:32] Hannah: yeah, I mean, we all just hope that it leads to less eczema. We're parents and we wanna take away the suffering of our children.

  I would hope that there's more attention drawn to how atopic dermatitis affects our life as a family. We think about it 24 7, and I would never wish this on any other parent.

  It is an awful, awful disease. I grew up with it. And so, my biggest hope is that all of this attention being drawn to one day a cure where no other person will have to go through the awfulness of this disease, I want that to be pushed towards a cure one day and see our children just live a normal life.

  [00:15:28] Lynita: I don't think people looking from the outside understand how every decision in every part of our lives, the first question you ask yourself, how will that affect my child's eczema? So I hear you and I get your journey, and Elizabeth?

  [00:15:43] Elizabeth: I'd say a universal frustration for both caregivers and children suffering with this is the lack of control over your life and the unfairness of the cause and effect. These children are innocent. It's not fair they were dealt this hand and the mothers did nothing wrong and one could say, oh, that's just your DNA destiny. But I do believe that you can influence the way your genes express themselves in your lifetime.

  So, if there could be accessible and affordable technologies or treatments that are not invasive, that can help ease their journey and. hopefully cure it forever. That is my dream because if no mother or father ever again had to see their baby, prefer to rip their cheeks open and bloody because it felt better than to just let the itch lie. That is a pain I'd wish on no family.

  By the way, these are two other brilliant ideas. But, with the support of GPER and the scientists, you're gonna rally around us one day. No child will ever have to choose between fun activities or just living their best life.

  And, and being held back because of itchy, inflamed skin. So here's to hoping so,

  [00:16:55] Mando: Yeah. My hope is that FMT becomes more main-streamed I think there is a lot of potential there for allergy and eczema. And similarly I hope that the process called metagenomic sequencin to track the, DNA of microbes. I hope that that science is applied more to eczema so that we can kind of figure out what the right balance of microbes might look like for future patients. These are all great ideas. And any conversation like this, of course as a parent, it takes me back to a lot of the struggles. So I'm looking forward to the next steps and wanna congratulate all the other winners. This, this has been an amazing conversation.

  [00:17:43] Lynita: I agree. I love that you mentioned main-streamed, Amando, because these technologies exist, but not for the applications that we're talking about.

  [00:17:52] Elizabeth: And I, if I could just add for anyone who's listening out there that you're still in the thick of this and you're listening to podcasts like, GPER, I also wanna, should I dove into the science the neuroscience of nurture and when it even feels like everything you're doing isn't enough for your child, the fact that you're there, like holding their hand during the night, holding their arms down, walking the house while you're holding them and comforting them.

  Their brains between the ages zero to three are creating a million neuroconnections per second. And when they are nurtured in those moments and not just left to cry and suffer alone those are amplified by almost a factor of two. And so even when it feels like what you're doing isn't healing them, you are.

  And when we nurture a generation of children who are suffering unfairly, their brains will have been bathed in happy chemicals like dopamine and serotonin. And although their physical bodies may be suffering, their brains, for generations to come will, will remember that they were nurtured, supported and they will be more resilient beyond that.

  So um, just hold onto that during those tough nights, cuz we've all been there. And thank you for hosting this conversation, Lanita. This is wonderful.

  [00:19:02] Lynita: What you've just said will resonate so strongly, Elizabeth, with our caregivers.

  It's so true. And it's nice to think you are giving something to your child, even if you're not giving them what you want to give them.

  I'm really excited that not only have you guys won a cash prize for your entries, but that GPER has also been awarded funds to link you up with researchers to see how these ideas progress. And I really hope that you guys have an exciting journey following your research.

  On that note, on behalf of GPER, thank you so much for your time. For sharing your ideas with everyone I'm sure that there will be listeners out there that will be running off to research. PEMF Mats and UVB and FMT and who knows what difference that will have down the track. So thank you.

  And if you have a good idea go to www.parentsforeczemaresearch.com/bigideas.

If you have an idea of your own, find out more about the Big Ideas 2024 competition here.