Blessed in a different way

Simoni and Javonte caught up at the Australian Bleeding Disorders Conference and interviewed each other about growing up with a bleeding disorder.

Javonte and Simoni were both diagnosed with their bleeding disorder at a young age, Javonte with severe haemophilia A, Simoni with type 3 von Willebrand disease (VWD) which is a rare and severe form. They had no family history of bleeding disorders.

They chat about growing up, and the difference in their treatment experiences. Although there have been some big advances in haemophilia treatments in the past few years, VWD treatment is still catching up. They also explain why it’s so important for young people with bleeding disorders to share their stories.

Tell us a little about you?

Javonte: I play soccer. I’m a very sporty, active man. I surf and work. That’s pretty much me. How about you?

Simoni: I’m studying medicine. I’m in my fourth of six years, so it’s a pretty long course.

When were you diagnosed?

Javonte: I was diagnosed at ten months. My parents would pick me up, and then I just had bruises, and there were no answers to it. And then we eventually got that answer.

Simoni: It was pretty much the same for me. I was diagnosed after me and my parents migrated over to Australia. Probably when I was about two and a half, three years old. 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, and you find out.

Does it run in your family?

Javonte: No. I think it kind of just spawned in me. 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, [laughs]. Blessed in a different way.

How was it growing up with a bleeding disorder?

Javonte: You get people saying just keep them in bubble wrap their whole life. But my parents 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 [laughs]. I’ve had my fair few injuries, obviously, but my parents 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: Having a bleeding disorder, I was very overprotective of myself as well as my parents, and then I kind of grew up like that. Every time I started sports, it was just injury upon injury. So, I think I imposed limits 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.

But if I could tell my younger self anything, it would be to be less scared. Be less fearful about what’s going to happen to me. Just do the runs, do the sandpit jump, because there are people around you to help and support you.

Javonte: Yeah. Go do your fun things. Go do your stupid things. Make mistakes. Just don’t let it stop you from doing anything.

What’s your treatment been like?

Javonte: I had a couple of stages where I was doing treatment 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: I would love something like what they treat haemophilia with. Something that’s just once a week and you’re off, instead of every second day.

Why do you think it’s important to share your story?

What would you say to other young people with bleeding disorders?

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 – 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: 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. [Laughs]

Watch the video of the interview

Images: photos supplied by Simoni and Javonte and reproduced with permission.
Interview photo: HFA
Stock photo: Yuri Arcurs for Freepik