No 187 September 2014

Living with VWD - Susie's Story

Susie is an Australian community member with von Willebrand disorder (VWD)

Hindsight is 20/20 or so they say...

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". As a child I was not a generally healthy person and I think the idea of investigating the bruising was far from my parents’ minds; they were just getting on with raising a family and dealing with my other illnesses. As I grew older and became more responsible for my own health, I worked through diagnoses of coeliac disease and a degenerative eye condition that needed major surgery. However, at no point was I having discussions about my bleeding, my bruising or my periods.

When my period started, my mother thought I would come to her with issues. However, as with many teenage girls, I already had a remote and challenging relationship with her. I also had no perspective to indicate what was "normal". How do you know what to talk about when you have no terms of reference? How do you know what to ask about, when no-one else at home is having "those" discussions? So I muddled through with the information printed on packets and boxes and in the few girls’ and women's magazines I came across. My older sister and I were in our own worlds at the time; we were very closed off from each other. Having children and the VWD diagnosis has actually brought us closer together. We can talk so easily now about experiences, past and current. This is what I wish for all women.

When my first son was born by caesarian, I had a postpartum bleed. I had lost consciousness, had 5 units of blood transfused and was taken back to theatre to resolve the bleeding. The experience was so harrowing I don't normally tell pregnant first time mothers my birth experience. And that 20/20 hindsight - my factor VIII levels were tested after my transfusion.... It begs the question what they thought they would find to explain the haemorrhage. And given VWF levels raise during pregnancy, it would have been prudent to test me 6 to 8 weeks after the birth. This was not done and there were no discussions with any health professional about my experience or the possibility of having a bleeding disorder. When my second son's birth was planned as a scheduled caesarian I had a fantastic care plan with preparations in the event of a bleed. After a lightning fast delivery and post operative care, I had no postpartum bleeding of issue. I thought I had drawn a line under that awful event and it was a distant memory.

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..." I have always wondered if I inherited VWD or I was the first mutation in the family. I don’t know if I am the only one in my family who has VWD.

So now, I engage with my health care professionals from a position of knowledge. My employer knows about my condition - this was helpful when I fell down the stairs at work and needed hospital care. I can manage my bleeding for dental work properly. I can manage my abnormal menstrual bleeding with good results. I can plan elective surgery with the involvement of the HTC to minimise issues. This has all been a direct result of my diagnosis. I've learnt that tranexamic acid is a regular part of my care. It's great for mid-cycle and heavy bleeding. It's also a minimum requirement for my dental visits. I've even had 6 teeth removed through the HTC with DDAVP as a pre-treatment for bleeding. Whilst I did bleed I was confident I was receiving quality care where my whole health was being considered.

So, whilst I don't have daughters, I can share my story and appeal to women to share theirs, talk to their daughters, keep the lines of communication open. Build the skills to talk about what's uncomfortable; you never know how much listening may help to make a difference. And if you're working through a diagnosis, information is power. Sift through as much information as you can, read the research that is coming out. Learn about the different types of conditions and how they impact on treatment options. Attend the events held by your local Haemophilia Foundation for women. If there aren't any, get some started. Ensure your local Foundation is inclusive. Go the conferences and camps for people with bleeding disorders, be a part of the community – it’s diverse and supportive. Being a part of something bigger than yourself is a fabulous way to gain perspective and new strategies for treatment. Become informed so you can be an active participant in your care.

And share your story. Listen to the stories of others. We can all learn so much.

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