My name is Jacqui and I have von Willebrands type 1. I was diagnosed about 12 years ago when I lived in the UK. A friend and I capsized in a canoe. About an hour later we stopped for lunch and as I stood up to put on my jumper I heard a huge number of involuntary gasps from those in the canoes behind me. I had bruised very badly all down my legs and my friend had minimal bruising. After that I went to see the doctor and insisted he run some blood tests to find out what caused this level of bruising. My results indicated a clotting issue and I was referred to the haemotology department at my local hospital. I struggled for adequate care and a diagnosis for some time, as the Haemotoligists specialised in blood cancers or haemophilia. I was told once by a Specialist that I didn’t have VWD, I was just a fat and short woman and that’s why I bleed abnormally. Sadly I was alone on that consult and no one else witnessed him saying that to me. As a result of this lack of care I went through five midwives and had the on call Haemotologist called out during labour to have my son. She was appalled that my notes said that due to me having VWD type 1 I needed no additional care for me or for my baby. I ended up having an emergency c-section after treatment with the tranexamic acid I’d brought into the hospital myself. Afterwards a new Haemotologist joined the local team and my care was vastly improved. I was re-tested and my VWD type 1 diagnosis confirmed. I was tested for DDAVP use, given Hepatitis B vaccinationsn and added to the national register of bleeders in the U.K. This register is useful in itself, but also helps to plan how much plasma store is needed. I moved to Australia almost 5 years ago and have only recently got a referral to a Haemotologist. My GP kept insisting that I didn’t need to be under the care of a treatment centre. One of the things that made me fight for the referral was reading an article written by another woman with the same condition; Chloe Christos. Through Chloe I have made contact with hundreds of bleeders around the world and learnt so much about bleeding conditions and treatments. I like to say that I had sought help before, I had gone to the doctor at 19 to discuss my very heavy bleeding during my periods and been told that it wouldn’t be looked at till I decided to have children. I am now 44 and have endured half a lifetime of inadequate care related to my bleeding condition. I love to say I was an exception, but I’m not. I regularly hear from women who’ve had similar experiences. Hear my voice! I will be fighting and advocating for proper treatment for me and others.