RECORDED: Wednesday 15 April 2026
SUMMARY KEYWORDS: haemophilia, Von Willebrand disease, bleeding disorders, gene therapy, treatment, school connection, mental health, diagnosis, family history, sports participation, public misconceptions, genetic counseling, Disability Standards for Education, World Haemophilia Day, advocacy.
SPEAKERS: Megan Gilmour, Natashia Coco
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.
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.
Today on Live & Learn, we have Natashia Coco. Natashia is the executive director of the Haemophilia Foundation Australia, the national peak body representing people with haemophilia, von Willebrand disease and other bleeding disorders and their families.
She joined the foundation in August 2003 as Director of Development and was appointed Executive Director in 2023. Natashia leads the staff team and works with council and stakeholders to help people with bleeding disorders live active, independent and fulfilling lives.
Welcome, Natashia, we’re so excited to have you on Live & Learn today.
Natashia Coco 01:40
Thank you.
Megan Gilmour 01:42
So today we’re here to talk about supporting school connections for students with complex medical or mental health conditions.
Let’s head into the first question, Natashia, tell us how haemophilia, von Willebrand disease and other bleeding disorders impact kids, and why it’s something every Australian needs to know and care about.
Natashia Coco 02:06
Thanks. At HFA, we look after all people with bleeding disorders, and as you said, haemophilia, von Willebrand disease and other rare bleeding disorders.
First of all, I thought it would be good to explain what haemophilia is, because typically people have not met anyone with haemophilia before.
So haemophilia is a bleeding disorder, and there are two types of haemophilia, haemophilia A and haemophilia B, and the bleeding occurs mostly internally, in joints, knee joints, elbow joints, ankles and over time, the bleeding into joints can cause arthritis, which you’ll see a lot in the older generation, when treatment wasn’t so good as it is now.
But we’re very lucky at the moment, where people and children with a bleeding disorder – haemophilia – have regular treatment and very, very good treatment. We’re part of the international world standards of treatment available in Australia.
It’s hereditary, but in one third of cases, it is a spontaneous gene alteration. And it’s very interesting, because men pass the gene on to their daughters, not their son, and then women pass the gene on to their sons and their daughters.
Von Willebrand disease is the same bleeding disorder. It’s just when they don’t have enough von Willebrand factor, similar to people with haemophilia, but von Willebrand is more popular than people with haemophilia.
Megan Gilmour 03:42
Okay, well, that’s certainly something that every Australian needs to know and care about, especially given that the bleeding that you’re describing should not occur naturally. So, we’re really keen to hear and understand more about this and get the word out to more people.
So, many people probably assume things about bleeding disorders. What’s the million-dollar question that you get from parents or loved ones when their child is diagnosed with or are they born with it as well – yes, it’s genetic – with bleeding disorders.
Natashia Coco 04:26
Yep, the most common is if people cut themselves, will they bleed to death? And it’s funny, we thought this myth had gone and it was raised again at our conference last year by a 20-year-old, and he said, I still get asked the question all the time, if I cut myself, will I bleed to death.
Now their blood doesn’t clot properly. That’s why they have a bleeding disorder. But with treatment, that stops the bleeding and it enables the blood to clot.
So, for people with a cut, a simple Band Aid might help. They may require extra treatment, depending on the cut, but at the end of the day, no, if people cut themselves, they will not bleed to death and die.
Megan Gilmour 05:14
Ah. And so, what you’re saying is once diagnosed with haemophilia or bleeding disorders, treatment is immediately implemented in order to stem bleeding if it occurs.
Natashia Coco 05:32
Yeah, exactly and typically, and we’ll probably talk about this later on, babies are diagnosed usually under 12 months old, so the chances of a small baby having a cut is very, very rare to happen before diagnosis.
Megan Gilmour 05:51
Yeah, so my next question was going to be, what’s the most important thing you want them to know to that main question, and you’ve answered that, which is with treatment, bleeding can be stemmed, and no, you won’t bleed to death if you cut yourself.
Natashia Coco 06:07
Yeah, yeah. Another interesting point as well, which happened back in the day too, is that people now can play sport. People with a bleeding disorder can play sport with the proper treatment and the proper coverage.
You know, we have children playing high competitive soccer and football, saying that, sports like boxing is probably not recommended, and usually when the family or the child will start talking to the haemophilia treatment centre, if their kid wants to start boxing, you know, we try to talk them out of it. But that’s another big point too, is that they can play sport like everybody else.
Megan Gilmour 06:53
Yeah, that’s amazing. Natashia, we’d also love to know what brought you into the world of bleeding disorders, if you’re willing to share.
Natashia Coco 07:04
Yeah. So, I have a pretty boring story. I saw the job advertised, and I thought, sounds like a great job. I had no idea what haemophilia was, or von Willebrand. Funny enough, after I did start the position, I came across the Bryce Courtney book April Fool’s Day, which Bryce did right about his son, Damon, who had haemophilia, who subsequently died of HIV.
So, then I realised I had read that book in the past too, and I actually went to some to school with someone with haemophilia, who I came across later on.
But back in the 80s and the 90s, the whole HIV and Hep C crisis that occurred, a lot of people with haemophilia didn’t want to tell anyone they had haemophilia, so that’s why I didn’t know that one of my primary school friends did have haemophilia.
So not a very interesting story, but the community is amazing. They’re very stoic. I’ve been with the organisation for over 22 years, and I just continue to strive the best for them, and they’re just an amazing bunch of people.
Megan Gilmour 08:16
That’s wonderful. And the fact that you’re still there after all of this time, means that it has a very special place in your life, or you wouldn’t have stayed. And I look forward to hearing more of your knowledge, because it must be now so extensive, given the time that you’ve been working with these amazing people.
So, knowing all that you know, Natashia, what’s your biggest hope for kids with bleeding disorders, their families and loved ones when they’re navigating this journey?
Natashia Coco 08:54
Yeah, my biggest hope is for a cure. And I remember when I started 20 years ago, we were promised a cure in 20 years, and we’re here now.
The cure is, unfortunately, not a cure, so it’s gene therapy, which is not available for children yet, and actually it’s been passed by the Medicines Board of Australia, but we don’t quite have access yet, because they’re discussing funding of gene therapy.
But gene therapy is very interesting, where it doesn’t cure your haemophilia, but it provides you enough protection where you don’t need to have treatment anymore, if it works.
It’s a one-time injection. It’s only very, very new, I would say, four years. And so, we’re still looking at the data, and you know, a big decision for people to make, if it’s a one-time treatment.
But that is the biggest hope that there is a cure down the line somewhere. If, when you do have gene therapy, you still have haemophilia, so you’re still going to pass on the gene, so it’s not going to get rid of the gene at all. But yeah, that’s what I hope for, for people.
Up until only five years ago, we still didn’t have access to the best treatment, available in Australia, and we managed to advocate for that, and that has absolutely changed people’s lives.
So even in the past five years, just to see the changes that it’s made to kids and adults as well, has been huge. So, you know, we look forward to what’s going to happen over the next five years.
Megan Gilmour 10:43
Yeah, it’s going to be like the scientific breakthroughs that are coming in, in the case with AI and machine learning is something in itself, but you’re already by the sounds of it, at that intersection, so exciting times.
Now forgive my ignorance, when we’re saying the gene is being passed on, in those cases, the person carrying the gene, has no knowledge that they have the gene?
Natashia Coco 11:13
So, in one third of cases, no, they have no idea that they’re carrying the gene, and in the other two thirds of cases, there’s a family history.
But there’s a misconception that if people have gene therapy, that it will get rid of the actual gene, but the gene will always be still there and being passed on, unless we have new technologies like CRISPR. Where CRISPR actually cuts it out. I know that there are some trials happening in the haemophilia space for CRISPR, but you know, who knows we could be talking in 5-10, years’ time.
Megan Gilmour 11:53
Yes, yes. Okay, so I think that answers my question. But if I have another question later on, I’ll pop it in.
What are the some of the common and perhaps frustrating public misconceptions about bleeding disorders, you’ve named one, and how have you seen this impact families?
Natashia Coco 12:18
Yeah, I had a good think about this, and I think the most upsetting one that I’ve heard and is less, I must say, is less now, is for families that don’t have a history of haemophilia or bleeding disorders, and you know, baby starts crawling six months of age or sitting up – has bruising.
They’re taking the baby to the doctors saying, what’s wrong? He’s got bruises everywhere, and they’ve been accused of family violence or child abuse.
I had heard this in one particular family, and they were in the Northern Territory, and look, their son’s probably only 12 now, and she said he was covered in bruises, and the whole family were just completely separated because of child abuse
Megan Gilmour 13:13
And no step taken to understand
Natashia Coco 13:14
No. So that is probably, you know, one of the most upsetting, upsetting of a diagnosis of a child. You can see why it happens, definitely. But for a family going through that as well, it just makes everything extra difficult
Megan Gilmour 13:37
Yes, and then you imagine, not only do you have people being wrongly accused of something, but also that child’s not going with the proper diagnosis for some time until all of this gets resolved – rather than first principles, let’s rule out –
Natashia Coco 13:54
Yeah. So, I hear that less often now, and also the other one is that these children need to be wrapped up in cotton wool. Not anymore, at all. Our treatment’s great, let them live normal lives.
You know, there’s nothing better than hearing a kid who’s playing elite soccer at the top because they’ve been, you know, their parents have supported them to do it. Their haemophilia treatment centres supported them to do it. Their treatment’s supported them to do it.
And that’s what we want to see, is children and adults too, leading a normal life.
Megan Gilmour 14:36
Yes, that’s wonderful. And can you give us a little insight into the treatment? Does that need to take place in a clinical setting, or is it at home treatment? Let us in on that.
Natashia Coco 14:50
So, there’s two different types. The main aim of the game is to enable families to do treatment at home. It’s less disruptive to the family, less travel to the haemophilia treatment centre.
And this can be done in a couple ways. Typically, babies will have a port inserted up on their chest, and the parents will be taught how to do treatment via the port. This is the most common with babies, and as they get older and the child’s more comfortable, then the treatment will start at home into a vein.
There also is subcutaneous treatment available too, just in the stomach as well. But again, that’s dependent on what treatment they’re on.
We have even advanced now to where pharmaceutical companies, through the haemophilia treatment centre, will either arrange home delivery of products or pick up from a local chemist as well.
So, with everything combined together it’s about trying to enable these families to live normally as well and put their treatment regime just as we’re sitting there having breakfast or we take time away for the kids to do homework.
Megan Gilmour 16:15
Thanks for explaining that. One other supplementary question there is, is that government provided treatment in terms of cost?
Natashia Coco 16:24
Yes, so all bleeding disorders treatment is 100% funded by the government, across federal and state governments access to haemophilia treatment centres, so nursing, physiotherapy, social work is also funded by the government, part of their comprehensive care model.
Though, in some states, they may not have access to a physio or the physio’s hours have run out, as we all know happens in the health system, so they may need to pay for that privately, but yes, products and treatment are all funded by the government.
Megan Gilmour 17:11
So that brings us to the question of how many Australian children and youth are living with bleeding disorders right now?
Natashia Coco 17:18
Yeah, so in Australia, there are about 8,000 people diagnosed who have haemophilia or von Willebrand disease.
And I went and had a look at the latest Australian Bleeding Disorders Registry in the data. And the data is from zero to 19 years old. And as of 2025 we have 914 with haemophilia, and 472 with von Willebrand disease.
Megan Gilmour 17:49
Right, okay, and so at some point in that young person’s journey, they’ll be in school.
Natashia Coco 17:59
Yeah, yeah, exactly when you think that typically children are diagnosed under one
Megan Gilmour 18:13
Yeah, yeah, okay. Is there a risk of delayed diagnosis at all? We kind of touched on that, but it might be good covering it again.
Natashia Coco 18:20
Yeah. So, for families with a family history during pregnancy, testing can be done. It’s up to the mother whether they would like to find out before the birth of the child.
If they choose not to find out beforehand, obviously, as soon as the baby’s born, the baby’s tested, the boy is tested, and the diagnosis will happen almost immediately.
For families with no family history, like I said earlier, usually around when they start crawling and walking and moving around, where the bruising starts, when the diagnosis process starts, and typically they’ll be diagnosed under one.
Megan Gilmour 19:06
Right. Do people with haemophilia have normal platelet counts. Is it a different process than platelets?
Natashia Coco 19:14
Oh, yes, because we also have platelet disorders too, under our bleeding disorders as well.
Megan Gilmour 19:25
I just ask because my son had a bone marrow transplant, and the start of that was very low platelet counts, but I realised that there’s a few different processes in the body that stopped bleeding.
So, I wasn’t sure about the link there.
What kind of complications do kids with bleeding disorders face? And it might not just be clinical; it might be life.
Natashia Coco 19:58
So clinical complications could be when they have a growth spurt, managing treatment and dosages, when they have a port infection in the port, inhibitors, which are really rare these days, when the body immune system is rejecting the treatment.
Complications in life we typically see around the teenage years, when they hate their haemophilia. They realise they’re different to everybody else. Why do I need to do this every day?
And that’s when everybody struggles to get them in and deal with them, but also trying to make them independent for their treatment, because they’re going to be an adult, they’re going to want to travel, if they want to go to camp, and, you know, they really need to learn how to treat themselves also.
So those years are very, very interesting. And look, they’re interested in normal children’s life too. We’re just adding a chronic disease on top of this.
So, we try and work with the young people too, if they’re connected with the foundation, may have gone to camps as a child, but then decide, you know that they’re too big to go to camps anymore.
So, we try and run youth programs, or get the young people to attend conferences, connect with others, but, you know, in some cases it works, some cases it doesn’t, but it’s very similar to any other, I would say, any other health issue around the teenage year time.
Megan Gilmour 21:46
Yeah, and what about anxiety and mental health issues? Is that part of this picture?
Natashia Coco 21:53
Yeah, it could be too, most definitely, especially if they’ve had bleed after bleed. You know, they’re depressed, or they can’t work, or they can’t go to school. You know, most definitely, there might be needle phobia that they’ve had as a child as well, that they’ll be dealing with too.
Then in the later stages in life, from say, teenager, you’re dealing with ‘Well, do I tell my partner’, you know, ‘I get a new girlfriend, do I tell them? Do I tell my friends? Are they going to tease me?’
We’ve had a lovely man, he’s in his early 20s now, who wrote an article for us about skiing overseas and attending musical festivals. And the biggest thing about attending a music festival is just make sure your mates know what’s going on. Just in case of an emergency, they know what to do.
Megan Gilmour 22:53
Yeah, yeah. So that health anxiety, potentially, you know, the risk of life-threatening bleeds or something, can that also be a part of – or can that develop from people around them, families, anxiety about it and school’s anxiety around it as well.
Natashia Coco 23:25
Definitely, definitely. You see the families who are quite laid back. You see little Johnny running around the park, jumping off slides and everything else, and you know, they’re very chilled about it. And then, you know, you see the families who probably aren’t as chilled about it.
So definitely, that anxiety would come through to the child too. One big thing that we try and do at camp, and it seems so old fashioned to use the word camp, but it still works, is taking the children out of their comfort zones, so high rope courses, you know, jumping from a high rope as well.
And that also, then you get mum and dad on the sideline, because they may not have done that before, but they’re in a safe space. They’re coached to try and take a chance, and so that also helps mum and dad too in those situations, with those adventure activities as well.
Megan Gilmour 24:28
Yes, such an important thing, given what you said at the beginning, that the goal, given the treatment, is to live life yeah and avoid boxing – want to protect the brain, but live life.
And I think that’s such a great message, and to actually have camps where you’re providing that opportunity so kids can embody that, and families can embody that, and know it’s okay, would be really important.
Natashia Coco 25:00
Yeah, definitely.
Megan Gilmour 25:02
Now, what about siblings and peers of kids with bleeding disorders, and how are they impacted? What should we be across?
Natashia Coco 25:09
Yeah, siblings play such an important role, and like any other chronic disease, are often the forgotten ones. You know, some older siblings can describe their lives as we couldn’t go on holidays because Johnny got a bleed and he got rushed to hospital, and Mum and Dad were in hospital for five days, and I had to stay with Auntie.
Or, you know, we couldn’t go away because we couldn’t be too far from the haemophilia treatment centre. Good news, that’s changed now, but you know, only in recent times as well.
Siblings too can see their brother or sister’s pain. Can see what they’re going through every day as well. So, they often can be the most supportive person to their brother or sister, because they know what they’re going through as well.
Then when you come across siblings later on in life, and also children who may have a father with a bleeding disorder, it’s interesting their take on it too, because some of them will say, I don’t want to have a child with haemophilia because I saw what my brother went through, or my dad went through.
But then other people like, oh, you know, my brother was okay. He lived a normal life. I’m not that worried.
So definitely siblings play an important role, and friends as well, like I was saying before, especially when you get older and you’re independent and you’re going out, ensure that your friends know what you have and what to do.
Megan Gilmour 26:46
Yeah, yeah. I guess there’s some big decisions for families who know that gene’s there, and I imagine genetic counseling and those sorts of things are really important in that situation.
Natashia Coco 27:01
And it’s something has just really become open and people discussing, and especially, you know, a couple of years ago, we couldn’t get anyone to talk about IVF if they went down the IVF path.
And in recent times, at the last conference last year, we had a lady talk about IVF and why she chose to do IVF. So, she was one of the third of cases with no family history; had an older – the first son had haemophilia and was very, very unwell for the first couple of years, and she had just decided I can’t do it again and went down the IVF path.
So, it’s a very touchy subject, but I feel like people are just starting to open up and really, really talk about it.
Megan Gilmour 27:57
And do you mean IVF with a different donor.
Natashia Coco 28:02
No. So in her case, it was about choosing the sex.
Megan Gilmour 28:07
Right, okay, yeah, that’s what I wanted to clarify.
Natashia Coco 28:10
Yeah, yeah. You can with the older generation who may have contracted, who contracted HIV or Hep C, they can do sperm washing as well, too, so they could still have children too.
Megan Gilmour 28:28
Yeah, important things to know, yeah. So, heading into the conversation about school, what’s the current population of school age children, if you know it, who have bleeding disorders, and how accurate would that data be?
Natashia Coco 28:46
I’m sorry, we have no idea.
Megan Gilmour 28:50
So, we know there’s that 1,386
Natashia Coco 28:54
That’s right.
Megan Gilmour 28:55
So diagnosed, is that all.
Natashia Coco 28:56
Yeah, they’re diagnosed. Lived with it, have treatment, are on the registry, so you can pretty much say that most of them are in school.
Megan Gilmour 29:07
Yeah, and I think it’s fair to say in the case of haemophilia, diagnosis has to happen, right? So, but I guess people might not register be on the registry as well.
Natashia Coco 29:26
Well, to have treatment, you need to be on the registry.
Megan Gilmour 29:31
Okay, so that’s pretty reliable data
Natashia Coco 29:33
Pretty accurate data, yeah.
Megan Gilmour 29:35
Okay, all right. Now, important question, do kids with bleeding disorders currently miss a lot of school? And if they do, why is that?
Natashia Coco 29:49
Not currently, but I think it’s really interesting to mention that this has only happened in the past five years.
So five years ago, I remember talking to a mum – her son had just started prep, or maybe he was in beginning grade one, and during prep, and she was telling me that he had so many bleeds inhibitors that he spent most of the time at hospital or home during prep, so he missed the most important first year of making connections, starting the foundations.
This new treatment came in, life-changing treatment, and so because of this, this enabled him to get back to school like anybody else. So currently it’s not so much of an issue. What we are seeing with the teenagers who are playing sport is they’re getting what we call normal sporting injuries.
But on top of that, can sometimes affect their haemophilia, or they may have a bleed, so then they’re having to miss time out of school to deal with that.
But again, you know that can be part of normal teenage years with sporting injuries that they get, but we are noticing that going to school, attending school, attendance overall is much, much higher than it was five years ago.
Megan Gilmour 31:13
Yeah, and that’s a testament to research and medical breakthroughs and all of that, not to mention, as you said, the ability now to be doing the treatment at home rather than in clinical settings, because that would also alleviate time away from school. Treatments could be given in the afternoons or before school or Sundays.
Natashia Coco 31:39
You know, a typical treatment regime these days could be once every two weeks, once a week, depending on what they’re on, their size, you know, all those factors, their treatment levels.
But going back to five years ago, treatment could be once every second day, once every third day. So that had a real impact on families, especially if you had families with a lot of people with a haemophilia.
So, we do have one family who have family history, and they have five children, and four of them have haemophilia. So, that you know, doing in the morning two to three times a week is huge, whereas now you know treatments change once a week.
Megan Gilmour 32:24
Well, that’s right, because I remember when my son was in Sydney Children’s Hospital, 2009 or 2010 and 11, there were kids all the time in clinic because that was the oncology and hematology ward, all the time in clinic having their treatments. So, it shows the difference between then and now what you’re talking about.
So, in that case, what are the critical times in a child’s life, a young person’s life with bleeding disorders like what? What are the big moments in school life for them?
Natashia Coco 33:11
Yeah, I think it’s during a growth spurt and trying to adapt their treatment to give them the coverage, and also if they’re becoming more active as well, you know, going from running around in circles in prep to maybe in grade six, you’re part of the athletics program, you know. So, your treatment dosages might need to be more frequent or might need to be higher. So really, they’re the most critical times. And working with your haemophilia treatment centre on that,
Megan Gilmour 33:47
and I imagine, for the school’s sake, it would be at K or the first year that a child’s in that particular school, because I can imagine the school doesn’t feel quite as relaxed as you might about what is this bleeding disorder, and what do we do here, and just that level of anxiety, would that be a fair statement, definitely,
Natashia Coco 34:13
and it’s interesting when, as we you know, we even get parents at childcare age too, ringing us for information. We have a newly diagnosed folder, which is mainly for families who are newly diagnosed. We give these to the schools as well, because at the end of the day, they’re possibly dealing with this for the first time also.
In some states, there are education programs run for teachers at the beginning of the year, like a Zoom that they can attend as well, or we get called up for information so then the child gets to an age where they’re willing to talk about it, and they want to talk about it.
So, they’ll use events such as Bleeding Disorders Awareness Month or World Haemophilia Day to get their whole class in red. They’ll get up and say, I have haemophilia. This is what it is. Here’s a balloon, he’s a pen, and they might do a quiz. So definitely, education starts, you know, right from childcare stage.
Megan Gilmour 35:19
And going back to something you said earlier, which always puts a smile on my face for teenage years, I imagine that’s an important time too, because you’ve got all the hormonal changes coming in, and you mentioned, you know, the perhaps not wanting anybody to know about it, or being in a bit of denial about treatment or whatever the teenage response is.
So, this might be a time to navigate as well. Are there things that schools need to do that you know happen at important moments, I suppose, in that child’s life, exam times or I’m thinking of, is fatigue an issue, for example, or any treatment side effects that might cause cognitive overload or overwhelm or fatigue or anything like that.
Natashia Coco 36:21
So no, in regard to treatment, the issue can be – so we talk about boys, particularly having haemophilia, and they’re diagnosed pretty much early on. Girls also can have haemophilia, and sometimes might be symptomatic because they’re carriers, so that can come in when a girl gets their period and so making the school aware that their daughter might need to quickly just leave class and go to the bathroom.
We had a call from a grandfather, actually, who was telling me about his daughter had exams and the school weren’t allowing her to have a break, but she did have her period during those exams.
So, what could we do to help educate the school that they weren’t just sneaking away and then this is more for high school. You know the issues in high school, where two people have to go at once, and they can’t go because they have to go in their break.
So that’s usually a female issue in educating teachers and the school that they may need to urgently just run out and go to the bathroom.
Megan Gilmour 37:42
Yeah, important to get that one in there. It’s about the practicality sometimes in the school setting that might be causing barriers to, I guess, a better school experience. If there’s anything else there to say about what should families and schools be prepared for at different times, let us know.
Natashia Coco 38:08
No, I suppose we haven’t really spoken much about the female side with a bleeding disorder that, like I said, usually they’re identified around when, when they do get their period. You know, we’ve heard horror stories of girls absolutely flooding everywhere, and you know, they can’t do anything about it at that point in time.
Again, we have treatment now, women and girls are recognised to have bleeding disorder. We’re trying to educate GPS and health professionals that this is a thing to not dismiss women and girls, but it’s really, if it’s going back to schools, it’s about educating the schools that this is happening, and this is what you need to put in place to allow her to get through high school.
Megan Gilmour 39:06
Yeah, I guess there’s lots of assumptions that could be made about girls and their periods, and it’s just a heavy period. Well, no, actually, this needs further investigation. I mean, it might not just be bleeding disorders. It could be something else that only affects women.
But yes, it’s I think it comes back to your first one of your first examples is trusting people with what they say, rather than the first assumption being that it’s a lie or misrepresentation. I think would serve everyone better.
So, are there any other big challenges or vulnerabilities facing kids with bleeding disorders at school? I think, as you said, ask you 5-10 years ago, this could be a very different conversation, but given the advancement in treatment, many of those things I imagine are now not main issues like they would have been.
Natashia Coco 40:19
definitely, yeah, yeah.
Megan Gilmour 40:21
So, we’ll take that as a really hopeful and triumphant moment to mark as well. I talked to so many people for these conversations, and the greatest wish is always that there’s a cure and then or better treatments. And sometimes I know that those just feel so unlikely or far away, and so it’s really wonderful to hear, you know, in this instance, that that has actually happened. And I also heard on cystic fibrosis too, a student that we’d actually supported, and while the genes were still there, the that the symptomology was no longer demonstrating that disease. So that gives me a lot of hope, gives me so much hope, and we need that right now more than ever.
Natashia Coco 41:24
So definitely, and with safety of products too, as well, that’s changed over the past 20 years in Australia. No, you talk about it, and then you think that was just 20 years ago, that wasn’t that long ago. And so, it’s amazing. Just the advance it everything’s just moving way too fast, and that’s a good thing.
Megan Gilmour 41:50
Yes, it is, and it’s something that we might forget in this age of AI and machine learning, when a lot of people are feeling, having negative feelings about it, and having, you know, I guess, legitimate concerns, but in terms of science and medicine and, you know the ability to trawl through research papers for all of the time that they’ve been published – in a blink, and uncover and unearth some pathways, or indeed, new therapies, as you’ve mentioned, CRISPR, and it is really hopeful.
And it leads me to reflect on a different aspect of the conversation that we’ve been having with government. So, it’s like, we need to get these children back to school and keep them connected to school, or you can just cure all of the diseases as soon as possible. And if you can do that, we don’t need to have the conversation about school connection, because it will be resolved. So, let’s have that conversation.
So, is there anything that you would like to share with us that you’ve observed about school life and things that schools or governments could do that they’re not doing now, that would assist, aid, support, children, young people, school students with bleeding disorders?
Natashia Coco 43:25
Look, I think my main, my main takeaway, would be to not wrap these kids in cotton wool. Let them be kids, and you’ll be provided the information on how to do it, right? Because we do, we need to keep these kids at school for a number of reasons, connection, education, building friendships. So, I think that’s my main takeaway, is don’t wrap them up in cotton wool.
Megan Gilmour 43:55
Yeah, and so I draw from that as well that schools may, some schools, some teachers, some administrators, may have concerns about haemophilia that are a little bit unfounded, or assumptions that may be outdated and could be limiting participation due to risk management, yeah, and your message is we need to deal with the facts and evidence of what we know now. And if that is if that is happening out there and kids with bleeding disorders are being told that they can’t come on school camp, or they can’t participate in the cross country or other things, then, is it fair to say your message is, please don’t do that.
Natashia Coco 44:52
Yeah. And look, parents are amazing. They advocate for their children. You know, any parent with a child with a chronic disease, they’re the best advocators that you’ll find around so you know, if you have your parent advocating, but then we can help advocate as well.
Megan Gilmour 45:13
Wonderful, and I will put in a plug here for the Disability Standards for Education, which is a national regulation under the Disability Discrimination Act that applies to every single school in Australia, regardless of state or territory or school system or school grade and the Disability Standards for Education is the is the pathway through which teachers, schools and families, can make adjustments for a young person who has a bleeding disorder to enable them the best support, the best equality of opportunity on an equal basis to their peers who don’t have a bleeding disorder, so that they can basically reach their potential in the way that they wish, in the way that they desire, and schools can get Commonwealth funding levies in order to run those adjustments, whatever they may be to give that equity so big plug there for the standards, because they do apply to young people with bleeding disorders.
As we come to the conclusion of our chat today, Natashia, is there anything else we should be asking you about school, quality of life for bleeding disorders?
Natashia Coco 46:35
No, I think we’ve covered it all.
Megan Gilmour 46:38
It’s been a great conversation, and I’ve learned so much, and I feel so hopeful as well. I’m really excited to see what happens over the next few years, and where this goes. I mean, there could be a cure, yeah, as in, at the genetic level, even. So, this is a great moment.
And in terms of a call to action, Natashia, what would your call to action for bleeding disorders be in seven words or less?
Natashia Coco 47:18
Oh, seven words. I think the call to action for educators, for schools, for parents, is inform yourself, educate yourself. And if you go on our website, everything is there.
Megan Gilmour 47:34
Yeah, so amazing. Look. We want to thank you from the bottom of our hearts for your service to our community across all of this time and to the Haemophilia Foundation Australia, where you work and apparently, seem to like it quite a bit because you’ve been there for a long time now.
And you know, I’d just like to encourage people to cheer for you by heading to haemophilia.org.au is that the right haemophilia.org.au, I should spell it, H, A, E, M, O, P, H, I, L, I, A.org.au, [http://www.haemophilia.org.au] go there. Give generously, support, volunteer, do whatever they ask you to do. And we also want to acknowledge as well that it’s World Haemophilia Day this Friday, 17 April.
Natashia Coco 48:33
Yeah, and we will have landmarks across Australia turning red in support of the day. So, if you drive past a bridge in Brisbane and it’s red, it’s in support of World Haemophilia Day,
Megan Gilmour 48:45
Thanks for pointing that out. I’ll be looking out. Thanks for joining me today, Natashia, it’s been wonderful talking to you.
Natashia Coco 48:52
Thank you, Megan, for having me.
Megan Gilmour 48:55
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 missingschool.org.au [https://www.missingschool.org.au], because every dollar makes a difference.
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