RECORDED Fri 15 Aug 2025
SUMMARY KEYWORDS
Epidermolysis Bullosa, complex health conditions, school connections, mental health, genetic condition, skin fragility, lifelong impact, support groups, medical management, public misconceptions, sibling impact, school inclusion, Disability Standards for Education, wellbeing support.
SPEAKERS: Megan Gilmour, Simone Baird
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Megan Gilmour 00:14
Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
And today on Live & Learn, we have with us Simone Baird. Simone entered the world of Epidermolysis Bullosa, EB, in 2000 when her daughter was born with recessive dystrophic EB, she joined DEBRA Victoria’s executive committee in 2002, later serving as Victoria coordinator.
Since 2013 Simone has been DEBRA Australia’s National Family Support Coordinator, working with families EB nurses and healthcare teams to deliver quality care and programs that support those living with EB.
Megan Gilmour 01:36
Welcome Simone. We’re so excited to have you on Live & Learn.
Simone Baird 01:39
Thanks for having me here. It’s great to be a part of it.
Megan Gilmour 01:43
Yes. So today we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s head into our first question.
Simone, tell us how EB impacts kids and why it’s something every Australian needs to know and care about.
Simone Baird 02:02
Yes, EB has a massive impact on kids and adults living with the condition, and also their families. It’s a rare genetic skin condition. We, it’s likened to third degree burns. We refer to it as the worst disease you’ve never heard of, and essentially, it’s a breakdown in the skin.
People with EB lack a protein that keeps the three layers of skin together, and their skin is extremely fragile, so with any slight knock, bump, form of friction, it could either tear the skin, blister it, or cause some sort of impact or damage to the skin.
And so, individuals living with EB have visible open wounds that everybody can see. Most of the time the wounds are dressed to cover them up and help with the healing process, but in the severe cases of EB, individuals can be wrapped from head to toe in dressings, and that includes individual wrap of fingers. It’s very visible, and so it’s very obvious to the community.
And yes, it’s lifelong, and there is no genetic cure for EB, so it’s also life limiting, and it has a huge impact physically, and, you know, on their wellbeing and their mental health space as well.
Megan Gilmour 03:38
Thank you. So glad you’re here to help us understand. Many people probably assume things about EB. What’s the million-dollar question you get from parents or loved ones when their child experiences or is diagnosed with EB?
Simone Baird 03:57
Probably the first question that we get asked is, is there a cure? Because it has a massive impact on one’s life, especially with the severe types of EB. And then, and this is all in the initial phases as well, of parents digesting the diagnosis and understanding what it means and how it’s going to impact the rest of their life. And then, once they absorb that, yes, the first question is, because it can be just a shocking condition, is there a cure?
And then beyond that, when they’re advised that there isn’t a cure and there’s only day to day management, then come the questions, usually of, what’s the lifespan? Will my child be able to walk? Will they be able to go to school in a mainstream school? Do they need a special school? Are they going to be able to play like other children and have normal relationships like other children? Will they be able to have children themselves.
It just unfolds from there. And there’s lots of questions, but mostly the million-dollar question is, is there a cure?
Megan Gilmour 05:05
Yes, unsurprisingly, what’s the most important thing you want them to know?
Simone Baird 05:15
The most important thing, I think. for people to know is that there is help. We are the only support group that provides assistance and help day to day living with EB. So, we’re a charity base, and that’s what we’re here to do.
There are other charities that look into research and trying to find cures, but we still feel that that’s a long way off, but mostly we are here to help, and the EB community is a very tight community that we remain in touch with on a regular basis.
And in addition to our support, there’s also the medical support that families can tap into, and we have EB nurses all around Australia that are in each state to support and help those families. They’re not alone.
Megan Gilmour 06:09
Yes, that was a great way to really land that answer, you’re not alone, and such an important thing in people’s lives when they’re facing these circumstances. Thank you for the work that you do. It’s a pleasure. So, on that we’d love to know what brought you into the world of EB?
Simone Baird 06:31
Yes, I, my first daughter was born in January 2000 so 25 years ago now, and Eliza was born with recessive dystrophy EB, so one of the severest forms it was present at birth, which at times it’s not always present when a child’s when a baby’s born, but in this case, it was.
And so, we were instantly transferred to the Royal Children’s Hospital in Melbourne, and then two weeks later, she was formally diagnosed with recessive dystrophy, so one of the severest forms of EB, and it completely changed our life forever.
Megan Gilmour 07:15
And here you are today.
Simone Baird 07:16
Here I am today, and sadly, without my daughter, Eliza, she sadly passed away in 2017 from secondary complications from EB, but we had her for almost 18 years. And yes, it’s it continues to change my life every day. And so, with my lived experience, I’m here to support families living with the same condition that we lived with for a long time.
Megan Gilmour 07:42
Well, thank you for trusting us with that. And there’s not really much to say, other than I’m so sorry, and it’s really something to see you showing up every day having had that experience, which could honestly just take you out, but here you are showing up for other people. So, you know, thank you so much again for that from all of us.
Knowing, then, all that you know, and that’s a lot, what’s your biggest hope for kids with EB, their families and loved ones when navigating EB?
Simone Baird 08:23
Yes, my biggest hope is that they don’t feel so alone or isolated. EB, because it’s so rare, it’s a very isolating and lonely journey, and there’s not many other people out there living with this condition. So, my hope is that they feel connected to the EB community, but also to DEBRA Australia, and their local or the major supporting hospitals in their city, wherever they may live.
And also know that we are here to support them and that their children can be well supported, to be transitioned into the community, into a school community, and to be a big part of other people’s lives and accepted and not be seen as different, or that they have some skin condition, and you know that we don’t really want to help them or support them, or that it could be contagious.
So, it’s all about awareness and raising those supports for families so that they feel that they can get through each day. Because some days can be really terrible.
Megan Gilmour 09:31
Yes, and what I heard there is something that we say a lot, which is, you know, in one respect, the work that we do is supporting these kids, but what we really need to see is how they support us and what they have to contribute and bring into our communities.
As you said, alongside that acceptance is the gifts and talents and aspects of themselves that they bring to us as well, which we think is really important.
Simone Baird 10:08
Yes, and they do bring so much. They have so much to offer. They’re very special people.
Megan Gilmour 10:13
Yes, and what they’re going through and what they learn from that? And, yes, absolutely. And I hope we’ll get into that with some of the questions that we have coming up.
What are some of the common and perhaps frustrating public misconceptions about EB, and how have you seen these impact families, including your own?
Simone Baird 10:39
Yes, some of the public misconceptions, and especially as children start school as well, even as early as preschool and kinder, as I said earlier, sometimes EB cannot be seen, especially in the milder forms. It can be difficult as a newborn baby, but then once they start to grow up and become more mobile, it can be less visual, but it doesn’t take away the fact that they have EB, and some days they still struggle, and EB is extremely painful. So, you know, they could be experiencing pain without people realising.
And so there is this expectation that, because they look normal and you can’t visibly see that they’ve got sore feet at that time, or dressings on their feet or open wounds or any other part of their body, for that matter, there’s this expectation that they do participate in society, as we all would if we don’t have EB, and sometimes that can be tricky for children at school, especially if their teachers are not aware of the real impact of EB.
And so, you know, modifications need to be made, and allowances need to be made for participation, say, for example, in physical activity or school camps or excursions, or when there’s walking with long distances. You know, allowances sometimes are not made when the condition is not that visible. So that’s one misconception. And impact on a on a child and a family, it can be quite frustrating.
The other is, on the other hand, of the severe types of EB, where you have a child that is dressed from head to toe in bandages for protection of their skin and wound healing of their skin, and they can have scabs on their faces. And you know, it can look quite confronting at times.
And then I’ve heard at times, you know, other parents in the school community say, I don’t want my child to be the one to hurt your child. We know that they have very fragile skin, but I just don’t want it to be my child to hurt yours. So, I’ve asked them to stay away. Yes, or other comments like, I don’t want my child to catch it from your child. And it’s not a contagious condition it’s a genetically inherited condition. So, so yes, just comments like that along the way.
But I find when children go to school, the most important part is the integration and the awareness and the training and education. That’s a big part of it, and when that’s done well, usually the school community is very welcoming and open and can’t do enough to embrace the child to ensure that they feel safe and accepted by their community.
Megan Gilmour 13:46
Yes, there’s some big misconceptions there that could lead to all sorts of social complications, and not to mention the mental health aspects that the young person is experiencing or could be experiencing.
Simone Baird 14:06
Absolutely, there’s a lot of self-esteem issues associated with EB. Not only is it a physical condition, because they are limited sometimes with – most days actually – especially with the severe types of EB – it’s extremely excruciating pain that they liken to third degree burns. And they’re wrapped up in dressings. They have pain relief every four to six hours to get them through the day and night.
And children with severe EB are mostly in wheelchairs. Not only are they in wheelchairs, but they can quite often be PEG fed [Percutaneous Endoscopic Gastrostomy (PEG) tube], reliant on a gastrostomy through a hole in their stomach, because EB affects all the soft mucus linings of the esophagus and throat and eyes are impacted as well.
So, it’s very physical. It’s a physical condition. And you know, they do feel different to their peers. They look very different, and at times they can look very confronting with open wounds and scabs and so that does impact their wellbeing and their mental health as well.
Megan Gilmour 15:20
Yes, well, thank you for sharing that that gives us more of a visual perspective, I guess, as well of what’s going on, which is important. And as you said, in some cases, it’s an invisible illness, but you might be still having those side effects, which I think we’ll get into in a little bit.
How many Australian children or young people are living with EB right now?
Simone Baird 15:50
Statistics say that there are around 1000 people in Australia that are impacted by EB, but DEBRA Australia doesn’t see all those people. We only see the people that are referred to us for support to fill the gaps between Department of Education or the health system or the NDIS or so we fill all those gaps as well as wellbeing supports.
So, on our database, we have just over 350-360 individuals living with EB, but we are aware that there’s a lot more out there. And we think it’s fair to say the ones that don’t come to us for support are usually mild and don’t require the support, or they’re so mild that they know they’ve got something different about their skin, but they actually don’t know what it is and haven’t been formally diagnosed.
So yes, we have a lot of people, especially with mild forms of EB, that know that they’ve got EB simplex, but to everybody else, it looks like it might be eczema or just something a little bit different about their skin. And so, you do you do at times, get a lot of people in the community say, oh, my child’s got eczema, or, you know, my child had a burn as well, or thinking that that’s what it is, but it’s actually EB.
Megan Gilmour 17:12
Yes, okay, well, that’s really interesting. When we think about how many people we might see with eczema. And just a quick question in there, you mentioned NDIS. Is DEBRA or is EB covered by NDIS?
Simone Baird 17:29
EB is on – has a tick box on the NDIS application form, but it does depend on the type of EB that you have, it does indicate how much support you do get from the NDIS. Obviously, the severe types, the dystrophic types of EB and the junctional types of EB do qualify automatically, and you do receive funding. The milder form of EB also receives funding, but it is extremely from one end of the scale to the other, compared to the severe types, and rightly so, because they have less needs.
Megan Gilmour 17:41
Yes. Well, thanks for that. I know that NDIS is a real gap for many chronic medical conditions, so it’s useful to know. And the genetic nature of this means that it probably yes, would tick that box, because I think one of the NDIS is criteria, is the disability has to be permanent,
Simone Baird 18:09
Correct, lifelong, yes, and look, it doesn’t fund every need that an individual has with EB, but it does provide good support.
But at times, EB is a type of condition, especially with severe EB, that an individual does deteriorate through life. And so those needs are ever-changing and supports ever-increasing, or the need of the support is ever increasing.
And so often people living with EB, especially severe EB, do require reviews before they get to their end of the plan date to top up that funding for whatever that need may be.
Megan Gilmour 19:25
Yes, so that, noting that it’s progressive in terms of its effects. You’ve touched on this next question, but we’ll go into it, because you may want to say more. Is there a risk of delayed diagnosis, or in most cases of EB picked up easily?
Simone Baird 19:46
Yes and no, and depending on where you live, if there’s a child born with EB, and especially severe EB, it’s usually present at birth, you can see that they are missing skin in certain areas over their body, and usually it’s the extremities of the feet and hands and legs from kicking in utero and through the birth process. So that is fairly obvious that this baby has something wrong with its skin.
If they are born in rural areas and non-major cities, because EB is a very rare genetic skin condition, there’s not a lot of awareness out there of what the condition is, and even that it exists even within the medical community.
So if you’re born in a rural area or on the outskirts of, say, Melbourne, it could be very possible, and it was what happened in my case where my daughter was born, she was born in a private hospital in the southeast suburbs of Melbourne, and she was born with missing parts of skin all over her body, mostly on her hands and feet, but you can see that her mouth was affected as well, and nobody knew what it was.
So, it wasn’t until the medical staff and nursing team rang the Royal Children’s Hospital, explained what it looked like, and they then said, sounds like it’s a form of EB. We need to get her transferred straight away. So, you know, it can take time. And then, of course, they’ve got to go into biopsies of the baby, biopsies from the parents, they send it away, and then they get a formal diagnosis.
So with the milder forms of EB, it can be very different in that it’s not present at birth, and it’s not until a child starts, in some cases, crawling or becoming mobile or walking, and once they become a little bit more active, then the parents realise that there’s some weird blister on the child’s skin and then they go to the doctor, and then they get a referral to dermatology at the Royal Children’s Hospital, and then it’s diagnosed from there.
So, there are different ways of diagnosis, and some can be significantly delayed. And then we have other cases where EB exists through generations of families, especially in the milder forms of families, and there are parents and grandparents and aunts and uncles with the condition, and so it’s highly likely been a genetic condition that if you’re pregnant, there is every chance that you’ve passed that on to your child.
So, with those cases, we often know about it, and we anticipate and get ready for the birth, and careful planning is put into place with our EB nurses and also an organisation known as Independence Australia, who are a government funded dressing supply company where all EB families get their dressings from.
And so, with that pending birth, we can prepare and have dressings on hand in the maternity ward, ready to go in case that child is born with missing skin. So that’s an advantage that can be prepared for. But in most cases, you don’t know that you’re a carrier of the recessive gene or of the EB gene, and that your child’s going to be born with it.
Megan Gilmour 23:19
Yes, very interesting. And just that, I suppose that referral pathway through the dressing supplier, could really make a difference here, in terms of people being aware of, well, the fact that it’s a genetic conditions, and you know that, you know link you were talking about, that where it’s really strong in families, yes, to be able to prepare would be really important.
Simone Baird 23:54
Yes absolutely. That’s best-case scenario that we can prepare and know that a baby is on its way, and the dressing company play a very important role with that, because they pack what we refer to as an EB baby box, and so we have dressings ready to go at the time of that birth. And they also play a very important role with individual care plans, school care plans for when that child transitions into school, which we can talk about.
So, it’s different with each birth and whether it’s picked up immediately at birth or down the track. But some cases can be – we have new families come to us with children that are six and seven, that have got mild EB and so got through life fairly okay
Megan Gilmour 24:48
to that point, yes
Simone Baird 24:49
but know that something’s not quite right, and then you have your severe reforms that just need support from birth
Megan Gilmour 24:54
for, yes, where they show up right at that point,
So, coming off the back of that question, the risk of delayed diagnosis this is an important question, given what you shared earlier about your daughter, what kind of complications do kids with EB face?
Simone Baird 25:18
There’re many complications that children with EB face, and it’s quite broad as well. And again, it comes back to the type of EB that you’ve been diagnosed with. So, with the milder forms of EB, usually the complications are finding, this is not quite often but sometimes finding a suitable dressing that works for you. You know, we can have complications with some forms, or some children with mild EB that the silicone in the dressings actually cause some damage on their skin as well, and so that then leads them to not being able to wear any dressings, which is an issue in itself.
Also, in the severe types of EB, there’s many complications, and that is, you know, slow to heal, low in iron, infection – and infection impacts everybody, whether you have mild, moderate or severe – that’s across the whole board, of anybody that has EB. But in the severe types of EB, there are secondary complications, and it can involve kidney disease, which was the case of my daughter, low iron, constipation.
As I mentioned before, EB impacts all skin across the body, and that involves internal skin as well. So in the surface of the eyes, they quite often have corneal abrasions, which is a tear in in the corner of the eye, it’s excruciating pain, and they can’t open their eyes, and they’re very light sensitive as well, so have to keep their eyes closed for several days and lots of pain relief to get through that period until It heals.
Another side effect is esophageal dilatation. So, with severe EB you can have strictures and tightening in the esophagus. And over time, it becomes very narrow, so that they struggle to swallow their own their food, and in worst cases, own saliva. And so quite frequently, my daughter used to have esophageal dilatations every eight weeks where they’d go into hospital. We’d go into hospital and have a dilatation under a general anesthetic, where they stretch open the esophagus to, you know, they break open the webbing and the strictures so that they can swallow again.
And also mobility, because the skin has constant open wounds as it heals, it heals tight like a burns patient, and so especially behind the back of the knees, under the arms, the fingers tend to contract and bend in so that they can’t straighten them out, they have webbing between the fingers, so that they lose space in between their fingers, and in severe cases, as a person gets older, quite often, their fingers and hands are like a fist. It fuses all over, and so they lose the ability to use their hands, same as the toes and the feet and also just loss of mobility entirely, so that they’re wheelchair bound.
So, it impacts terribly, and it’s broad depending on the type of EB that you have, but there are many complications of EB.
Megan Gilmour 28:52
Yes. Thank you for sharing that it does broaden our perspective. And also going back to something you said at the beginning about the worst disease known. I mean, anybody who’s had wounds, I mean, it’s nothing like it, but even just one cut or one – just that alone, and thinking about that all over your body, the pain and then, not to mention, as you said, the fact that we have skin internally as well as externally. And all of those different effects, the esophagus, the outcome of the healing, of the skin, tightening and scarring, and all of the other aspects of that. It really is so much for a young person to deal with.
Simone Baird 29:50
Yes. And they also get, oh, sorry,
Megan Gilmour 29:53
go ahead.
Simone Baird 29:54
They also become very tired and lethargic, because through the large open wounds, and you just refer to, you know, the wounds that we can get. The other day, I cut my finger, and it was the smallest cut, but I put it in water, and, oh, my God, it really stung.
And when we, when we refer to people living with EB, their wounds can be the size of my fist. And as those wounds are healing, they lose a lot of hemoglobin and body fluids through an open wound, and so a lot of energy goes into the healing process.
Megan Gilmour 30:29
Yes, I was thinking that when you were talking about it before just the body, the work that the body’s doing to try and patch that up would be affecting so much, and it’s fair to say that the body would be in constant distress, and work – like without rest, overnight, everything.
So, I fully appreciate what you’ve just said there, because it was something I was thinking about as you were talking about it.
Simone Baird 31:05
Yes, also the ability to eat as well. It’s very difficult because the mouth is also impacted, and it’s quite painful, even if they’re fed through a gastrostomy or a PEG through their stomach. You know, it’s a formula of milk, and it is high in energy. But it’s not like the food that we you know, fruit and vegetables that we eat to keep well and healthy.
So often, their nutrition is poor, and they fail to thrive as well. So, I mean, my daughter was almost 18, but she was very petite and little, and most people thought that she was in primary school because she was so little. So yes, it does have a huge impact
Megan Gilmour 31:45
yes,
Simone Baird 31:46
it does have a huge impact
Megan Gilmour 31:49
across the board.
Simone Baird 31:50
It does, yes,
Megan Gilmour 31:52
yes, my son had a PEG, so I understand what that it’s all about, and the jevity – full of sugar and whatever it is to try and get energy in. But yes, it’s not exactly a nutritious meal.
Simone Baird 32:07
No, not at all.
Megan Gilmour 32:08
Yes, it sounds like all aspects of a young person’s life, or anyone with EB, for that matter, is affected.
And so, turning to what that means to people around them. How are siblings of or siblings and peers of kids with EB impacted? What have you observed and what should families be across?
Simone Baird 32:35
That’s a really important question, because quite often the siblings are the silent, forgotten people, and it’s not intentional. It’s just because caring for a child with EB is so full on. It’s 24 hours a day, and you just have no time for anything – it’s survival mode, and a lot of the time, especially with severe EB, you have many, many admissions to hospital.
So, the poor siblings are pushed aside, not, not deliberately, of course, but, and you know, I have another daughter as well who was younger than my eldest daughter, and that was the case for her, we spent a lot of time as an inpatient in hospital.
And you know, they’re often passed from pillar to post, just for somebody to look after them, grandparents, aunts, uncles, school friends, just so that their life can be as normal as possible, and they can still go to school and have their after-school activities, but it’s not easy.
Megan Gilmour 33:41
Yes, I understand. I’ve unpacked this a lot with my daughter as well, who’s the sibling in this case. Yes, and they’re having their own journey, and in some ways very much alone in that. As you said, it’s not something that’s intended, but when you’re being pulled into a medical crisis constantly, and you don’t have a choice about that, that’s what the reality is day to day for that other child or other children.
And we had Siblings Australia on as well, and we went into a lot of detail about the sibling experience. So yes, it’s really important to recognise in the whole family setting and for schools to be aware of as well. Of what that young person is experiencing in their own journey.
Simone Baird 34:38
Correct. And that’s the other thing with school. I know towards the end of my daughter’s life; we were an inpatient for four months in ICU and chopping and changing between wards. And I was so happy at that time, it was a tough decision, but I actually sent my younger daughter to a different school, because at primary school, my daughter with EB, overshadowed her existence and her individuality at school.
And so in secondary school, I made a conscious decision to let her have her own space and her own life, and I was so glad, especially in the final stages of my daughter’s life, because the school principal rang me every day in ICU just to see how and if she had, if my younger daughter had been at school, she would have copped that and with all good intention.
But that’s a heavy load for a sibling to carry and to answer those questions. Yes, you know, they need to be who they are. They’re an individual as well, and need to be respected for who they are, and not the sibling of a chronically sick child.
So, the other thing also, especially with siblings who live with EB especially, again, in the severe cases, they could also be bullied at school, not that it’s the case of my daughter or many children, actually, but not even so much bullied. But they can face the questions of, why does your sister or brother look like that? What’s wrong with their skin? Why do they have scabs all over their face? Why do they have open wounds?
So, you know, that’s also a heavy load to carry and to answer questions too, and also in the home space. You know, children with EB have to have daily or every second, daily baths that can last for up to two to three hours. In our case, it was three hours because you’re undressing all the bandages. You have all these open wounds that are extremely painful. You hop into a bath, a big bath of salted water with bleach in it as well to fight the infection. And it is painful, and so the sibling’s around, the siblings are out in the house doing their own thing, but they can hear the screaming that’s going on.
And it’s that trauma of hearing your brother or sister in pain that a lot of siblings have trouble with.
Megan Gilmour 37:16
You can’t forget that.
Simone Baird 37:17
You can never. And, you know, I often say, would say to my husband, what if my youngest daughter ends up having a child with, say, for example, reflux or, you know, a common baby issue, but is crying all the time.
Is the trauma from her childhood of hearing her sibling cry all the time going to drive her mad, you know, or is going to be a trigger that she’s not going to be able to cope with? It’s just little things like that that you wonder later in life, is that going to be a traumatic experience and have an impact?
Megan Gilmour 37:52
Yes, and not to mention, in this case, as well as in others, I’m sure, is this sibling lost their sister as well at a young age after witnessing all of that, and then was expected just to be at school, you know, and we know that that’s a good thing, but they’ve also had an incredibly different experience in their life, a traumatic experience, and there they are in the school system, in the community, and they’re carrying something that is totally invisible to anyone around them.
Simone Baird 38:37
Absolutely, you raise a really valid point, and I can personally totally relate to that, because my daughter passed away two weeks before Christmas, and – excuse me – and so my younger daughter basically didn’t finish the school year. She had, you know, the last week off of school because we had funerals and what not, and because she started at a different school yes, my younger daughter didn’t have friends at school that knew that she had a sick sibling. She kept that very private.
And so, they all went on school holidays at Christmas time, and then she started year eight with nobody knowing that she’d actually passed away and not even the teachers knew. And it wasn’t until I came to the end of term parent teacher interviews that I told one teacher, and she said we had no idea
Megan Gilmour 39:31
she kept that to herself.
Simone Baird 39:33
She kept it to herself, and she also found it hard. You know, kids find it hard.
Megan Gilmour 39:39
How do you open that conversation with people you’re just eating a Vegemite sandwich next to?
Simone Baird 39:44
and you’ve just started secondary school. You’re in year seven, and you know, then you go the Christmas holidays, come back to year eight, and your sibling has passed away.
And even in general conversation, kids don’t know how to handle those conversations, so that if they’re asked, ‘Do you have any brothers and sisters?’ – ‘No, my sister passed away at Christmas time’. What does another person know, how do they know what to even say to that? And they just looked at her and go, ‘Oh!’ you know,
Simone Baird 40:11
Your daughter actually spared them the discomfort of that conversation. That’s what was probably happening there.
Simone Baird 40:18
Yes,
Megan Gilmour 40:18
and I think siblings or children who go through these things or live in these with critical or chronic diseases or illnesses or and their siblings are very different young people. They have seen things and know things well beyond most of their peers.
Although, having said that, we know there’s a lot of chronic illness in our communities, including mental conditions as well, but these kids sort of have an emotional map that in some ways, developmentally might not be where their peers are at, but in other ways, they are incredibly acutely aware of those frontier issues of human life, and you know, especially where you’re in a hospital setting for a lot of the time too, and I’m sure your younger daughter was in the hospital space, you know, a lot of the time as well, visiting or otherwise. And they take on a lot for their unwell sibling and a lot of guilt that they’re well.
Simone Baird 41:41
They do, absolutely they do. You know, they are very fortunate that they weren’t born with – inherited the genetic condition. So, they do carry a lot of guilt that they are normal.
So, and you know, in that space, that’s where DEBRA Australia plays a massive role, because we have wellbeing support to individuals and families living with EB, but also their extended family members, so that they can access psychology support.
And so, we have biannual camps that we bring the siblings along to as well. And it’s really important because they get to meet other families living with EB. And more importantly, they get to meet other siblings who are in exactly the same situation as them. And they create really important bonds, and strong bonds with them, and stay in contact over the years.
And a lot of siblings also go into the health field themselves. My daughter’s currently studying the third year, final year, of Bachelor of Nursing. So, you know, they’ve seen a lot in their short life, and they’re very wise and empathetic and caring people.
Megan Gilmour 42:55
Yes, they, and they do tend to go into the care sectors. I think there’s some evidence for that. I’m certainly seeing it in my family as well.
And yes, perhaps it is the case that siblings, where they do have the connections that, for example, DEBRA can offer, might not need to talk about it with other people, because they’ve got because they can have such a rich conversation with others, with the lived experience, it’s almost like they can then operate in that other part of their life, the everyday part of their life, and kind of quarantine that off, and allow that to be a place where that doesn’t have to enter every conversation or be, you know, the constant there.
So, yes, that’s, there’s so much to unpack there. I should move on to my next question. Otherwise, we could talk forever!
Heading into the school scenario. Now, what is the current population of school aged children, if you know, with EB and how accurate is that data? Is it tracked for example?
Simone Baird 44:10
Yes, I can only reference our database that we have on our on our system. So, we have about 120 children that are at school or university across the country that have EB.
Megan Gilmour 44:26
Yes, and I think you’ve answered this, but we’ll ask it anyway, do kids with EB currently miss a lot of school? And why?
Simone Baird 44:39
Yes, yes, kids with EB do miss quite a bit of school, especially if you’ve got severe EB. There’s a lot of hospital admissions. There’s four EB clinics, five EB clinics a year, depending on what state you live in. But you know, and they go for regular skin checkups and just pediatric checkups, general health checkups.
So, they do tend to miss a lot of school, and even outside of the hospital, there’s a lot of pain associated with EB. And they can just wake up being so sore or have a really rough night. Often the nights are so long, and pain is worse at night, because you’re not distracted in any other way.
And so, they can wake up very sore and just not able to go, not able to walk, not able to attend an excursion to the zoo or a camp or so they do miss lengthy periods of time at school, which is a shame, because school is the norm in their life.
Megan Gilmour 45:40
Yes, yes. And that’s why we have demonstrated that two-way digital connection to the classroom makes attendance possible when physical attendance is impossible.
We’ve showcased that through the use of robots, but it can be any technology, which is what we’re moving to now is school’s own technology, for example, you and I are not in the same room, and we’re having a conversation here today, and this is just ubiquitous technology that’s so easily turned on for a student who physically can’t attend, or for whom attendance might create complications, or, you know, unease or pain or anything else that might stop a child from being there.
So, we always give that a plug, because it’s entirely possible for these kids to still attend if they can’t physically be in the classroom. And it sounds very much like EB’s case, where, you know, there’d be absolutely no argument that at those critical times, not just clinic visits or hospitalisations or around procedures, but just every day, might be terribly difficult to get there physically. And yes, and be able to be there physically, not just get there.
Simone Baird 47:00
Yes, absolutely. And the schools are usually very good at modifying the curriculum at that given time to send home so that they can do some work at home or liaise with hospitals – the school system within the hospital. If you have a lengthy admission, often the schoolteachers within the hospital are bought into that space as well, so that, yes, the child can continue on.
But you know, with EB because it’s such a painful condition, and you know, it is managed reasonably well with the pain team and the palliative care team, but sometimes kids are just not up to participating.
Megan Gilmour 47:46
Yes. And, you know, we also talk about how important it is socially for kids as well, to maintain their connection to friends that they’ve made, or peer groups, because that can normalise what is a very difficult, challenging day-to-day experience.
So the social connection and benefit of being in a community is also part of the reason why we really push the use of two way digital connections to the school of enrollment and to have that maintained that they’re important, they’ve they’re remembered, they belong and they deserve the education inclusion and all the other aspects that school offers as well, and somehow, in many cases, could be more important for that to be maintained, given what they’re going through and school education as something that can provide psychological benefits.
Simone Baird 48:48
Absolutely, yes, it’s really important. And with EB especially, I mean, everybody needs friends, you know, you just, you need that’s a crucial part of life. And to be totally excluded – you already feel isolated enough having your rare genetic skin condition and looking different so then to not be socially included or a part of a group of friends at school, it just has that extra layer of impact on wellbeing and mental health.
Megan Gilmour 49:18
Well, it’s also, and I’ve said so much about this issue, I don’t know if I’ve ever said it this way. If we allow every young person with a health or a chronic health condition to be excluded when they’re not well, what message are we giving everyone?
Are we saying that having a health condition means you don’t matter anymore, or we need to keep you away from the action, because, you know, people with medical conditions or health conditions don’t participate. You know, we don’t want to see that here in these spaces.
I mean I’m being absurd. But if we look at how many kids are left out of school each day with a chronic health condition, be it genetic, be it short term, be it something they’ve acquired that’s long term, an injury, you name it, there are a lot of kids, a lot of kids out there.
So that’s a lot of people who, well, it’s, it’s a concept around which a lot of people are a lot of people are experiencing, and it’s not just the people who are outside of the school. So, what are we saying to people inside the school? You don’t belong here if you’re not well?
Simone Baird 50:45
And look this day and age and the way society is now, it just shouldn’t, it shouldn’t happen exactly. There are so many ways around being inclusive to children with chronic health conditions. Doesn’t matter what health conditions that they are an important part of the school community.
Megan Gilmour 51:04
Yes, absolutely
Simone Baird 51:05
And there are many ways to do it.
Megan Gilmour 51:07
Yes, I agree. And we always pop in the note here about the Disability Standards for Education that these children, children with EB young people with EB, are absolutely covered by the Disability Standards for Education, which calls for every single school in Australia, no matter what school sector it is, or what age group it is, or what state or territory it is to provide access to the curriculum; access to the classroom; the use of assistive devices like a wheelchair or a telepresence system; learning alongside peers; additional supports.
Because these adjustments can make access possible and create an equal playing ground for that young person to participate in a way where they can unlock their potential or be able to have an equal chance at a great educational experience.
And we’re not talking necessarily about educational attainment here, whilst that’s a great goal, we’re just talking about the means to access and participate and have an equal opportunity. So, we really plug that here.
In terms of school life challenges, what should families and schools be prepared for at different times, given what you’re talking about is the biggest challenges and vulnerabilities facing kids with EB? So, given those challenges and vulnerabilities, what should schools be prepared for at different times?
Simone Baird 52:56
Learning, number one, embracing the child with EB, and the family that are supporting this child with EB, and agreeing to work together in support of that child.
So, as I mentioned before, EB can be very confronting, and the first thing that people in school, communities or workplaces or just the broader community, the first thing they think is, I don’t want to hurt that child. I don’t want to be the one that does something wrong.
And that’s okay, but with education and training, schools – we have found – embrace that family and that child, and they can’t do enough. Going back to the dressing company that we have here in Melbourne, they have a nurse that is part of the program that does school care plans for children living with EB, so that school care plan is implemented into that school.
It is handy to try and find a school with a nurse or a first aid support person that also learns a little bit about EB and embraces the child’s condition or disability and is a support person there.
The other thing is that children with severe EB, especially through the Department of Education, qualify for additional funding so that they could have a support worker in place to be – not hover over them – but to be alongside them, to support them with the physical, inclusive curriculum.
You know, children with EB at times, can’t even take a lid off a pen, because if they lose strength in their fingers, or their fingers are bandaged and they’ve got sore wounds on them, or, you know, whatever the case may be, they can’t sit down on the mat, they have to sit at the back of the group, you know, sitting on a chair or a soft cushion, or the support worker helps them toilet and, you know, feed and all those extra additional needs that a child with EB has.
So, the school community can embrace, can modify programs to ensure that that child is included in the curriculum and in, you know, sports activities, camps, excursions, that kind of thing. They all go to mainstream school and they all, they all learn the same way as everybody else. It’s just their physical condition that sets them back a little.
Megan Gilmour 55:35
Yes, and those individual learning plans or inclusion plans, care plans, or sometimes they’re called health plans. So, all of these enable the adjustments needed in the school and the recognition needed in the school to – through the Disability Standards for Education – receive additional funding. The school gets additional funding to enable these things to happen.
And that’s why, when we make that connection between a health condition and the standards, we can really see not only schools providing the adjustments and provisions and equaling that playing field, but also that the school can be funded to do so, importantly, which should mean that everything can work a lot better.
So, is there anything that you think – you know – what’s happening now to address the challenges that we’ve talked about with children in these circumstances, in schools, and is it enough? Leading on from that, what do you think schools and governments currently don’t know, and how could they do better?
Simone Baird 56:54
I think, look, they don’t know what they don’t know, because it’s a rare genetic condition. And there’s very limited numbers of people living in Australia with this condition. So, I think the biggest thing that they can do is to be open to embracing a request that is put forward to their school to accept a child living with this condition.
Listen to the family, and more importantly, listen to the child, because the child knows their condition better than anybody, and you know, they become the experts, and so be led and guided by the child.
One thing that I know most about children living with EB is that they love going to school, they love being with friends, and they love participating in activities, even if they’ve been modified for their participation.
So, I think the biggest thing is, yes, just embrace them, be open to learning. Everybody – everybody can help with caring for a child with EB to ensure that their needs are being met, and just socially accept them and include them.
Megan Gilmour 58:01
Yes, wonderful. Is there anything else that we should be asking about school quality of life as we get to the end of our conversation today?
Simone Baird 58:11
Yes. The other thing that is very important for a child to be part of the school community is that because of their skin condition, they struggle with the heat. So, summertime is a critical time of year that children with EB tend to not be able to go out in the heat because they’re covered in dressing.
So, they’ve got layers and layers of clothing and dressings and bandages to protect their skin, and so schools need air conditioning and not evaporative, refrigerated split system air conditioning. So that is another thing that needs to be well thought out and prepared before a child integrates into the school system.
And you know, we have our EB nurses that are a big part of transitioning children into the school system, and they do a lot of education and training, and they have a lot of helpful hints and tips that they help the Department of Education with, like where to send a child in a busy classroom, where to put their locker.
At the end of the day, they go to their locker five minutes before everybody else, so that they’re not stepped on or shoved or accidentally pushed or, you know, their foot isn’t stepped on to create more trauma.
They go to lunch five minutes earlier. If they have to stay in at lunchtime, they’re allowed to choose a friend to stay in with them, just simple things like that, that enables them to be well integrated into the community.
Simone Baird 59:44
Oh, and the other thing to note also is that it’s really difficult as a parent to give the responsibility of care of your child who is so fragile, over to schoolteachers and the school system to ensure that they’re well cared for.
So, for a parent to entrust that your child’s going to be looked after by somebody else who you haven’t built up a rapport with yet, it’s really difficult, really difficult to do, but we all get there, and the schools generally do a great job.
Megan Gilmour 1:00:17
Thank you for sharing that. So that’s an amazing conversation. As we come to the very last moment, and you’ve been so generous with everything that you’ve shared and your own lived experience, which can’t be easy to share. Obviously, you’re doing that to help other people. So, we want to recognise that.
What’s your call to action for EB in seven words or less?
Simone Baird 1:00:50
I would have to say, communicate, listen and support. Go over and above to accept these children and adults.
Megan Gilmour 1:00:59
Yes. Thank you so much. That’s a great call to action. And on the back of it, we’ll not only say the biggest thanks to you today, but also a shout out to DEBRA Australia.
You can find them over at Debra, D, E, B, R, A.org.au [https://www.debra.org.au]. Go there, give generously, offer volunteering support if DEBRA accepts it. Do whatever it takes to support this organisation and the people and young people that it supports as well.
It’s been amazing talking to you today, Simone, if there’s anything further you’d like to say about DEBRA Australia, now is the moment, so I’ll give you that opportunity.
Simone Baird 1:01:56
Thanks, Megan. I’d love to say something about DEBRA Australia. And as I mentioned earlier, we are the only active support group set up to support individuals and families living with EB. And so, we fill all the gaps between – aim to fill all the gaps between the health system, Department of Education and the NDIS that they can’t fund.
And you know, we’re a very small not-for-profit charity, so we don’t receive any government funding. So, any donations that come into us enable us to provide this critical help, support and care to families via our Psychology Program, EB Services Program with our nurses and the Family Support Program, which is what I run today to help families. So. thank you for listening to us.
Megan Gilmour 1:02:52
Thank you for your time today, Simone, it’s been really great to have this conversation with you and to have the opportunity to share this with our audience, and for us to learn as well, and we’ll put all of this to great use. So, with that, I’ll wrap.
Simone Baird 1:03:14
Thank you.
Megan Gilmour 1:03:17
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to missing school.org.au [https://www.missingschool.org.au] because every dollar makes a difference.
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