Simoni and Javonte each have rare bleeding disorders – Simoni with von Willebrand disease (VWD) type 3 and Javonte with severe haemophilia A. Together, they talk about growing up with a bleeding disorder, managing treatment, and the value of hearing stories from other people like them.
Video transcript:
Simoni: I’m Simoni, I have von Willebrand’s type 3 and I’m 22 years old.
Javonte: My name’s Javonte, I’m 18 years old, I’ve got haemophilia severe A.
Simoni: So when were you diagnosed?
Javonte: I was diagnosed at ten months. What about you?
Simoni: Oh, wow. That’s really young.
Simoni: No, I was diagnosed after me and my parents migrated over to Australia. So probably when I was about two and a half, three years old.
Javonte: Oh, really? Ok. Yeah.
Simoni: How did your folks kind of get to find out about this?
Javonte: They’d pick me up all the time, and then I just had bruises, and there was kind of no answers to it. And then we eventually got that answer.
Simoni: Pretty much the same for me. I mean, I went to daycare and the people were like, why does she have so many bruises? You know how it goes. You go to the hospital and they run some tests, I guess, and you kind of find out.
Simoni: Does it run in your family?
Javonte: No. I think it kind of just spawned in me.
Simoni: Yeah.
Javonte: And then mum’s obviously the carrier, but we have no clue where it came from.
Simoni: Yeah. I think mine’s some sort of a weird, wacky mutation somewhere as well, because not many people in my family have it at all, actually.
Javonte: We got blessed.
Simoni: Yeah, hahaha! Blessed in a different way.
Javonte: Exactly.
Simoni: Yeah, yeah.
Simoni: So what do you do? Like for your fun?
Javonte: I play soccer. I’m a very sporty, active man. I surf and work. That’s pretty much me. How about you? I heard you are doing nursing, is it?
Simoni: Medicine. Yeah.
Javonte: Sorry. Sorry.
Simoni: No, no. You’re all good!
Simoni: I’m in fourth of six years, so it’s a pretty long course.
Simoni: Having a bleeding disorder, I was very overprotective of myself as well as my parents, and then I kind of grew up like that. So sports – every time I started sports, it was just injury upon injury. And I was like, okay, I’m not going back there anymore.
Simoni: You seem to be the opposite.
Javonte: Well, I’ve had my fair few injuries, obviously, but my parents kind of supported me in a really good way. Just let me make my mistakes. But I know my consequences of playing sports and I’m okay with that.
Simoni: So does having haemophilia limit your life in any way?
Javonte: Definitely has limited me at school. I had to take a lot of time off school because of all the soccer injuries and everything. It definitely affected my grades.
Simoni: Yeah.
Javonte: And hasn’t really affected any relationships or friendships for me.
Simoni: Yeah, limitations, there were only really the ones that I think I imposed on myself. Mostly because I was scared of getting hurt, because once you get hurt you kind of know what it feels like. And you know how long the recovery takes and the bunch of extra needles you have to get. Like, I don’t want that again.
Javonte: When did you personally realise you had a bleeding disorder?
Simoni: Probably like the transition from primary to high school, like from the year six to seven. Everybody’s kind of out doing a bunch of things, and then I was kind of just a little bit limited, like for example the sports kind of things that you do at school. And the more things that I went out to do – you go out with your friends, you go to the mall, you do whatever it is that we used to do when we were younger.
Javonte: Yeah.
Simoni: And you realise you kind of have to plan your life around taking your treatment, Right? And I didn’t really realise it to begin with because my parents used to help me out. But then as you get older, you kind of have to think like a week in advance. I’m going to do this, so two days before I need to do this. And travelling as well – like, man, you’ve got to take all the treatment stuff with you-
Javonte: And you’ve got to get the notes from the doctors and all of that. And then get stopped for having-
Simoni: Oh absolutely. They’re like opening it, looking at things, and I’m like, you have no idea what this is. I can explain it to you.
Javonte: And then the security comes over…
[Laughs]
Simoni: Was there like a turning point for you where maybe you decided to tell more people or anything?
Javonte: I never really thought of anything because since I was diagnosed young, it was kind of just a part of my life and my routine almost. When I started telling people? Probably high school.
Simoni: Yeah.
Javonte: But people kind of just found out when I got injured and everything. So, I didn’t really necessarily tell people.
Simoni: Yeah.
Javonte: But yeah, all my friends know, everyone knows. I don’t really hide it too much.
Simoni: Yeah.
Simoni: [School] camps were probably when people started to know because you had to take the stuff with you.
Javonte: Yes.
Simoni: Then they’d be like, what’s that? And then as we got through high school, it was more like, oh my God, you have this and that and all that kind of jazz that comes with it.
Simoni: I’m a little bit more reserved. I keep it until I have a reason to tell someone. Obviously, a lot of the people I know are within the whole healthcare kind of field, so most of them understand it. But especially for people who aren’t, I think sometimes in my head it’s a little bit of a differentiating factor. So I just kind of keep it under wraps until I need to. I’m not secretive about it, but if my friend opens the fridge and they’re like, what is all these boxes – yeah – then you know you’re kind of out with the story, I guess.
Javonte: Yeah.
Simoni: How long have you been involved with the Haemophilia Foundation?
Javonte: I went to camp since I was pretty young. I wouldn’t say I’ve been heaps involved, but I pull up to an event or two every now and then.
Simoni: Yeah.
Simoni: I think my latest involvement probably started a few years ago, doing a bit here and there for the past conferences. And then this year I joined the Women’s Advocacy Group, so that’s been pretty cool. Really great experience, meet so many people, and like this conference too – so many young people that I just didn’t know existed, right?
Javonte: Yeah.
Javonte: Being surrounded by actual people with haemophilia is pretty cool. I don’t know anybody who has it.
Simoni: No, I don’t know anybody who has von Willebrand’s type 3 either. There’s lots of type one, because that’s more common. And like last night at the dinner, we’re all just doing our thing.
Javonte: Yeah.
Simoni: And it’s really like nobody’s thinking, oh bleeding disorder, bleeding disorder. Everybody’s just being normal.
Simoni: So Javonte, I’ve been given this. It looks really cool. What is it?
Javonte: Pretty much, I won a drawing competition and they gave me the opportunity of being in a comic. So it pretty much just teaches you about the experience of a child having haemophilia and how having haemophilia actually works.
Simoni: Yeah.
Javonte: It takes you through the body but in a fun, superhero way.
Simoni: OMG, this is amazing. If I was a kid and I had access to this, it would make it so much easier to kind of understand. Like when you’re young, you don’t really have the full concept of what’s going on with you.
Javonte: Why do you think it’s important to share your experience?
Simoni: I think the most important part is knowing that there’s a community out there. As a child, you don’t really know what’s going on with you, and seeing people – even if it’s just online, just on the Instagram post or the Facebook page or the website or in the haemophilia book – or your book, for that matter – it gives you confidence, I guess. Confidence that you’re not alone, that you’re not the only one living with this, and that real life exists beyond a bleeding disorder, right?
Simoni: Your whole life is defined by when you’re going to take your treatment and what you’re going to do. Can I go skateboarding or not tomorrow, or do I need to wake up at 5 a.m. to do my treatment first? Right. It normalises it and makes it so much easier to just go on with life, knowing everything else is the same. You just have a bit of an extra step before you go about doing anything risky.
Simoni: If you want to reach out, you can, knowing that everyone wants to help you.
Javonte: Yeah.
Simoni: And knowing that you’re not alone.
Javonte: Especially for young kids getting into the high school ages, because I’d say that was probably the hardest transition.
Javonte: Yeah.
Simoni: Just knowing older people that have been through that is pretty nice to know.
Javonte: Absolutely.
Simoni: Do you think your parents responded differently to your bleeding disorder as you grew up?
Javonte: They responded really well. Really, really well. Because obviously you get people saying just keep them in bubble wrap your whole life. But they went the complete opposite path, and I’ll forever be grateful for that. They didn’t let me do stupid stuff, but they allowed me to do some stupid stuff.
Simoni: You are a key example for people living their life. No, that’s amazing.
Javonte: What treatment are you hoping for in the future?
Simoni: Well, I mean, something like what they treat haemophilia with, right? I would love something that’s just once a week instead of every second day and you’re off.
Javonte: Oh, every second day? Yeah, I used to be on that with factor.
Simoni: Yeah, how was that changing from doing every day?
Javonte: So good. Because I had a couple of stages where I was doing it twice a day. And then I went every day. And then I went every second day. And about three or four years ago, my treatment changed to every second week, which was amazing. Changed my whole life. Didn’t have to stress about doing needles before school or anything like that.
Simoni: What would you tell your younger self if you could go back in time?
Javonte: I’ll tell him go do your fun things. Go do your stupid things. Make mistakes. Just don’t let it stop you from doing anything.
Javonte: And what about you?
Simoni: I think I’d tell myself to just be less scared. Be less fearful about what’s going to happen to me. If I’m walking down the oval, don’t worry. Just do the runs, do the sandpit jump, because there are people around you to help you and support you.
Javonte: What would you tell someone with a bleeding disorder?
Simoni: I would say that life doesn’t stop just because you have a paper cut. Just keep going. If you have aspirations to become whatever – if you want to become a skydiver, a lawyer – you can go do that. There’s nothing stopping you. Once you have your treatment, you’re off. You’re ready to go. So don’t let anything limit you, and don’t let anyone tell you or let you believe that you’re limited.
Javonte: Yes, completely agree with that. Don’t let it stop you from doing anything. Have your treatment, don’t be too stupid, go have your fun.
Simoni: Yeah, fun with a little bit of common sense.
Javonte: Exactly. Yeah, yeah.
Simoni: Thanks so much for talking to me today, Javonte. I think there’s a lot of young people and young boys out there who are going to look at you as absolute inspiration.
Javonte: Thank you. It was very nice meeting you.
