Carly’s story: Life with Glanzmann thrombasthenia

* Carly is not her real name

My platelets are like bricks without cement.

My name’s Carly, I’m 22, and I have a rare bleeding disorder called Glanzmann thrombasthenia – which basically means my platelets are like bricks without cement. They’re all there, but they can’t hold anything together. Because of this, I am extremely susceptible to bleeds and bruising. My symptoms range from bruises splattered all over my body like an abstract work of art to gum bleeds that have lasted 120 hours. And although some of those incidents may be because I walked into a door handle or ate a hard carrot, most of the time I wake up with a giant red welt on my face or a mouth full of blood.

Now, I’m a teacher, right? And when you wake up with said giant red welt on your forehead, you just know you’re going to get comments. First period on a Monday morning, I’m blessed with my Year 9 class – isn’t that bloody lovely? We’re half an hour into the lesson, and I’m going around helping my students with their work when one of them says, ‘Miss, did you see the fight last night?’ Now, although I’m not an avid UFC watcher, I usually keep up to date with the big fights that happen. But I stopped and thought about it – I couldn’t remember seeing a fight on my Instagram feed the night before. So, I said, ‘No, I didn’t. What fight?’ Then, with that prompting tone, they said, ‘Miss, are you sure you didn’t see the fight?’ By then, I realised I’d walked right into their little trap – and it was me who had been in the fight. 

TREATMENT CHALLENGES

Anyway, as a result of my symptoms, I’ve had quite a bit of treatment. Because of the nature of Glanzmann’s, most bleeds don’t just stop on their own – they either need pressure, tranexamic acid, NovoSeven® (recombinant coagulation Factor VIIa), or a combination of all three. Now, that’s for nose or gum bleeds – but what about periods?

Unbeknownst to some, you can’t put pressure on a period. 

Well, my body has never known a life post-puberty that was without hormone treatments. Over the past 11 years, I’ve tried the never-ending options of pills, progesterone, IUDs, and combinations of those. And although they have definitely helped with the main symptom – bleeding — like the old saying goes, you cut the head off the snake, and two more heads come out. While being on hormonal treatment, I’ve experienced all the symptoms under the sun – from mood changes and weight gain to bloating and fatigue. But while innovations and research have definitely improved, we still have a long way to go.

Because of my platelets, I’ve had some troubles growing up, but through those challenges, you wouldn’t believe how much I’ve learnt. So, I’m here to give some pieces of advice I wish I knew when I was younger.

Now, the people with bleeding disorders here will know how much it takes from your life – it takes time, effort, and planning. Every ‘normal’ activity requires extra thought. On top of managing my bleeding disorder, like many others, I work a full-time job, I’m a full-time student, I take on extracurriculars, and I try to have some sort of social life. I don’t know about you, but that’s a lot to take on! Luckily, I’ve never had to tackle it all on my own.

SUPPORT IS IMPORTANT

My first piece of advice is about the importance of support systems — the people who lift you up, listen without judgment, and remind you that you’re not alone. I’ve been lucky to have incredible support throughout my life, though I’ll admit I haven’t always appreciated just how much they’ve done for me.

I didn’t appreciate my school friends enough for never going ice skating just because I couldn’t go. Or my sisters, for wrestling with me like they would with any other sibling (even though I bear those scars for two weeks). Or my parents, who never complained when they had to drive me to the Emergency Department at 11pm on a Saturday night.

So, Step 1: Find people who accept you for you.

LIVE YOUR LIFE

Step 2: Live your life – don’t let your fears and anxieties hold you back. If you take all your necessary precautions and your doctor says it’s okay (please don’t go against your doctors’ and nurses’ orders — we love them), then do it!

A fun fact about me: I’m actually quite an active girl. I train four times a week ranging from Pilates, strength training, conditioning, and Muay Thai. If you told ten-year-old me – the girl who only did swimming lessons – that she’d one day be throwing kicks and elbows, she’d be absolutely gobsmacked. I owe a huge thank you to my trainer of the past eight years for helping both me and my mum overcome our fears around training. Now, it’s my favourite part of the week.

So, don’t let health anxiety hold you back from living your life. You’ll be surprised by what you’re capable of when you stop letting fear take the lead.

Step 3: Let me set the scene. I’ve just been through one hell of a year – Year 12. I’ve sat all my exams except one, and that last one is the day after tomorrow. Then I’m done! I go to sleep that night, ready for one more torturous day of study. It’s 2am, and I feel something leaking on my lip. I have no tissue next to me, so I wipe it and try to go back to sleep – but it’s still there. In fact, it’s on my chin now. It feels sticky and hot. It’s a nosebleed.

I turn my lamp on, sit up, and instantly my nose turns into a bloody waterfall – literally. Fast forward six hours later, my nose has doubled in size and the blood has only just started to slow. All I could think about as the hours passed was how all the effort I put into studying for a good ATAR was going down the drain – which is a big reason why we didn’t go to emergency straight away, ultimately worsening my condition. I hated going to the hospital and tried to avoid it at all costs, but in the end, that only hurt me more.

PUT YOUR HEALTH FIRST

So, the most important piece of advice I can give you is this: put your health first. A bleeding disorder affects every part of your body, and most illnesses or injuries take longer to heal and need more care than usual. It can feel like you’re always at the doctor’s, always taking medication, and that it’s taking over your life – but please, promise me you’ll never forget this: your health always comes first.

You can study again, you can train again, you can make new friends, and you can rebuild your life as many times as you need — but you only get one body, and it deserves your care.