Susie – living with type 1 von Willebrand disorder

I keep learning new things in my journey with a bleeding disorder and I’ve come to the opinion that this is actually OK. Up until the diagnosis of my second son with type 3 (severe) von Willebrand disorder (VWD), I had no idea I had a bleeding disorder. I was one of those statistics - a woman with symptoms but no diagnosis and so inadequate treatment. Fast forward to now: I have gained knowledge and perspective and I am being well treated by my Haemophilia Treatment Centre (HTC).

I have type 1 von Willebrand disorder, which is often explained as a mild condition which does not impact heavily on most people’s lives. But everyone’s experience is different. Growing up I was prone to bruising and bled freely. However, my mother maintained that our family were fast healers so it was OK. I remember hearing, “oh we just bruise, that’s what we do”.

However when my son was diagnosed with type 3 von Willebrand disorder, this led to the testing and diagnosis of both my partner and me. Initially I was shocked, but the more I read about the condition, the more the pieces of the puzzle fell into place. The massive swellings on my legs the size of my fist I got with mosquito bites. The flooding and the massive clots passed with my periods. The time I grazed the back of my foot going down stairs and it bleed for hours, prompting a hospital trip for care. The oozing bleeding after routine dental visits. The countless other times I noticed, “Oh, I’m still bleeding, like it’s just oozing...”

So now, I engage with my health care professionals from a position of knowledge. My employer knows about my condition, I can manage my bleeding for dental work properly, manage my abnormal menstrual bleeding with good results and plan elective surgery with the involvement of the HTC to minimise issues. This has all been a direct result of my diagnosis.

Being a part of something bigger than yourself is a fabulous way to gain perspective and new strategies for treatment.

I’ve been connected with HFWA for many years and currently serve on the committee. I have always found the foundation to be passionate, supportive and dedicated to improving the wellbeing of the bleeding disorder community. Become informed so you can be an active participant in your care. Share your story. Listen to the stories of others. We can all learn so much.