I was diagnosed with type 3 von Willebrands disease as a baby. My parents were uncertain on what was wrong for some time – I was covered in bruises from the time I started learning to walk. Doctors were very judgemental and even accused my parents of physical abuse. It wasn’t until I bit my lip and almost bled out overnight that they started taking my parents seriously. That was when the path to diagnosis began. I count myself very lucky that I was diagnosed so young, as I have been able to manoeuvre through the challenges presented by VWD with the dr’s on side – to an extent. My sister – three years younger than me was diagnosed shortly after birth, as they suspected that she would probably have VWD too. We lived in rural NSW at the time and actually had to move towns as the hospital wouldn’t offer my mum pre or post natal care due to the risk. Living in the country we had to make an annual trip to the closest HTC to check in with our team. If any bleeds happened and we had to go to the local hospital, we spent a lot of time arguing with the ER dr’s on how to treat us, which almost always ended up with dad calling the hematolgist who would then call the hospital back and pass on a piece of her mind!
The isolation has always made treatment difficult, but since moving to the city I have always been so impressed with the rapid response from my hemo teams whenever I have any issues – even if it isn’t a bleeding issue.
I have found that as I get older the patterns in my experiences have changed a lot, for example I rarely experience severe nosebleeds as I have in the past, but now seem to have joint bleeds a lot more often. It has been interesting working through these changes now as an adult.
I hope that world haemophilia day this year helps increase awareness of all bleeding disorders, and especially in women. It would be amazing to one day be able to visit the GP and have them tell me what my symptoms may mean – instead of the other way around!