Living with Type 1 VWD

Tyler’s story

This is a transcript of Tyler’s presentation at the Australian Bleeding Disorders Conference 2025.

Hi everyone, my name is Tyler and I’m in my early 20s. Today I’ll be discussing my story as a young person with Type 1 von Willebrand disease.

From an early age it was apparent that I had bleeding characteristics that were unusual for someone of my age. Whether it was bruised legs from riding the bikes at daycare to bleeding noses that never seemed to stop.

It was apparent that there was something unusual. My next appointment with my paediatrician after my first day of daycare was where my diagnosis process starts. It was here that my first blood test occurred. Little did I know how many were to come. After the results from this blood test, an appointment was set up where I met an amazing haematology oncology nurse who would end up being the most positive influence throughout my bleeding journey.

When I was growing up as a young person with a bleeding disorder, I learned from a young age that I was able to still enjoy many of the sports and activities that many young people want to participate in – however, there were going to be precautions that I would have to take.

Whether it was soccer, Go-karts or basketball, my parents always ensured that I had all the necessary protective equipment and then some. This ranged from playing with a helmet when I played soccer to having additional protective equipment above what was required when racing.

Through being cautious I was still able to live my life to the fullest while ensuring that at all times my bleeding was taken care of. On top of these extra protective equipment items, I always carried my factor injections ensuring that even if something unforeseen occurred I was still able to treat my bleeding on the spot before proceeding to get any required medical attention.

As a young person with von Willebrands, I used to face struggles when getting medical attention. Limited awareness of the condition led to complications when visiting the GP. As such, I often found my mother and I explaining to the medical professionals what the condition was and how it affected me. This was especially challenging when GPs were reluctant to treat me out of fear of mistreating my condition.

However, as a young adult I have found myself visiting a variety of specialists and I’m pleased to say that I have noticed vast improvements when it comes to the awareness of the condition. Medical professionals are often aware of the condition and more informed on how to treat it.

I would like to finish my speech by acknowledging the incredible haematology team at my hospital – my haematologist and haematology nurse. The dedication and commitment that these two have provided has made my condition much more manageable. From learning to inject myself using a banana, to mitigating risks when it came to sport.

Having the same people watch me grow and develop has been a privilege. They gave me the ability to live my life without the bleeding disorder being a daily reminder of the things I couldn’t do. Instead, they gave me the confidence to do things I never thought possible. Without their contributions, I wouldn’t be who I am today. Thank you.