I was diagnosed with VWD type 1 (no sub-classification, we don’t use those in Australia – yet) just before my 17th birthday, but struggled for years both before and after with very heavy menstrual bleeding, GI bleeds, nose bleeds, regular serious bruising, as well as what I now believe were undiagnosed and untreated micro and mild joint bleeds. It has been through connecting with the community (8 years after my diagnosis) that I’ve been able to educate both myself and my doctor on what can happen with type 1s and what bleeds I do get. One of the most exciting and challenging things I’ve done since becoming an active member of the community 5 years ago is being a loud and proud advocate for patients (particularly women and girls) and a blogger over at www.mymissingfactor.com. Sharing my personal and medical history with others can be scary, but every time I connect with someone both inside and out of our extended international family that needs to hear what I have to share.

This World Haemophilia Day (and every day after!) I encourage all women with a diagnosis or bleeding symptoms to continue to advocate for themselves in medical, social, professional and any other situation they might find themselves in. You know yourself and your body better than anyone else ever will, so you are the best person to advocate for what is best for you.