I was born with factor X deficiency, a rare genetic bleeding disorder that affects the blood’s ability to clot. Every week, I give myself an injection to prevent spontaneous bleeds. It’s a non-negotiable part of my routine, even when the rest of life feels chaotic.
As a child, I never thought much of it. It was just my ‘normal’. But as I became a teenager and started wanting more independence, I struggled. Like many young people, I pushed boundaries and resisted treatment.
As an adult now, I still have days where I can’t be bothered doing treatment and wish I didn’t have to, but I learned pretty quickly what happens when I skip it and end up with a bleed. I’m also very lucky that my husband knows how to do my treatment and can help me. His support has been especially important during my period, when I have days that are quite heavy due to the condition.
I’ve been fortunate to travel, work remotely on the mines, and do pretty much everything I’ve wanted without being held back. My travel bags might be a little fuller than most, but I’ve never had any problems bringing my supplies on holidays or on mine sites.
Having factor X has even opened up opportunities I wouldn’t have had otherwise. I’ve met like-minded people, been involved in youth work, and attended haemophilia camps, all of which have added real value to my life.
Over time, I’ve come to accept that this is something I’ll live with for the rest of my life. It’s just part of my routine now. Having a strong support system, including my Haemophilia Treatment Centre, as well as my family and friends, has made all the difference.
