VWD self-advocacy – your voice matters

Sophie’s story

This is a transcript of Sophie’s presentation at the Australian Bleeding Disorders Conference 2025.

Living with von Willebrand disease (VWD) type 1 has shown me that the most powerful advocacy tool is knowledge. Today I want to share my story and how understanding myself, my choices, my emotions, and my support system shaped the care that was right for me (particularly during my pregnancy journey).

Before I begin, I want to recognise that my story is just one experience. Not everyone has a diagnosis before pregnancy, and not everyone has had the positive support I have been fortunate enough to receive. I hope we also hear those stories as well, throughout this conference and beyond.

1.UNDERSTANDING YOURSELF

I once assumed getting my wisdom teeth removed at 20 was going to be a non-event. The only preparation I had done was to ensure my freezer was stocked full of ice cream. Going into the surgery, as I counted down from 10 to the anaesthetist, I imagined waking up to someone telling me it was all done.

But instead, I woke up choking on a mouthful of blood, to a theatre full of panicked faces, and someone telling me they were going to have to put me back under as something was not right. In hindsight, I’ve realised they had thought the operation was finished, so had intentionally started to wake me up, only to realise I was losing too much blood. But the experience for me felt a little akin to a horror movie where the anaesthetics go wrong and you wake up in the middle of the operation.

~Two litres of lost blood, an emergency trip to the ICU, blood and iron transfusions, a month-long recovery, and a very traumatised dentist later, I was eventually diagnosed with von Willebrand disease, and my sister was diagnosed shortly after. Prior to this, we had both had relatively minor presentations, so nobody had ever put it all together. Although in hindsight, there were probably some signs:

• It turns out it is not normal to be pulled aside by a teacher worried about abuse at home because of the bruises and a black eye after a week’s skiing holiday,
• Or be worried about period leakage during a two hour school exam,
• Or to have bleeding gums prior to a first date because the nail-biting nerves got the better of me,
• Or in my sister’s case, to have fingerprint bruises after one of her friends hugged her too eagerly.

These symptoms were not easy to piece together, and there was no perfect ‘aha moment’ that I or my family missed. Instead, there were a collection of ‘hmm, that seems odd’ moments, often followed by hesitation about raising them.

Even my mum, who is a GP, felt it was not her place to push when a dentist dismissed her concerns that my sister’s two-day episode of bleeding after a tooth removal years earlier did not seem right. And if a GP in ‘mum mode’ can feel hesitant to advocate strongly for unusual symptoms, then we clearly have a long way to go. Self-advocacy often starts with understanding your symptoms, trusting your instincts, and being persistent in seeking answers when things do not add up.

2.UNDERSTANDING YOUR CHOICES

More than ten years after the ‘wisdom tooth debacle’, von Willebrands was not a big part of my life. I had medication to manage it if needed, and it was not until I decided to start a family that I realised I still had a lot to learn about what it might mean for me and my family.

• A big (and pleasantly surprising) learning for me was that I still had a number of options available during pregnancy despite the bleeding disorder. So please don’t let anyone tell you there is only one approach.
• The other thing I learnt was that it is important to do your own research as well. To be clear, I am not suggesting you ignore medical advice and instead rely on Dr Google. But there is a range of other quality resources out there for your benefit such as – the Haemophilia Foundation’s online resources, speaking or reading about others’ experiences… I also attended the hospital’s pregnancy classes. My research equipped me with the right questions to ask my healthcare team. By the time I got to the birth, I was confident about my available choices and their risks, the experience to expect, and the possible decisions I might need to make.

I made the personal decision to have a planned caesarean. It helped to avoid the use of instruments such as the vacuum device, which has a small brain bleed risk to my son, or a larger risk if he had inherited the condition. It also allowed us to plan when I would have the relevant clotting factor concentrate medication to help avoid pre- and post-birth bleeding. I was lucky that my healthcare team were incredible in giving me the full pros and cons list of this decision but ultimately supporting me in it.

3.UNDERSTANDING YOUR EMOTIONS & YOUR SUPPORT SYSTEM

Despite the joking way I often talk about the ‘wisdom teeth debacle’, there were a lot of heightened anxieties that I had about birth and pregnancy in general. I think the previous hospital experience left a bit of trauma, and it was important to recognise this and process it prior to the birth.

It was also critical to let those around me know about these anxieties. My support system was pivotal in helping me manage them. My husband, family, and friends played a major role, and so did the medical team, including those in the room during the caesarean. If you are a medical professional, please validate and treat these concerns seriously, even if they seem minor.

Luckily for me, the healthcare team did take my concerns seriously, even when met with my ‘it is probably nothing but…’ statements. From the midwife who literally held my hand in the moments my partner was not allowed to be in the room, to the anaesthetist who stepped me through every stage, to the obstetrician who even supported my desire to play music during the surgery.

Birth is a full-on experience for anyone, and I am thankful to the team for helping me manage those anxieties and previous trauma, and proud of myself for understanding my emotions and, through my support system, advocating for what I needed.

A SUPPORTIVE HEALTH SYSTEM

Monique, the other presenter, and I have been discussing the importance of self-advocacy. But I also want to acknowledge the role that systems play in creating a culture where it is easier for patients to advocate for what they need.

Hospitals are complicated, systems are clunky and adding a haematologist to the long list of professionals and processes involved in a birth can make things more difficult. I had an extremely positive experience in the lead up to my birth in the public system at my Haemophilia Treatment Centre hospital. I had a singular point of contact in my specialist midwife, who had experience with bleeding disorders and a close working relationship with my haematologist.

In an unfortunate tale of two cities, my sister gave birth two years before me in another capital city, and her experience was not the same. She found herself running around the hospital trying to reconcile what the various midwives, obstetricians, haematologist, and anaesthetist were saying, and they were saying slightly different things. It was a logistical and emotional nightmare, and it ultimately impacted her care. My sister could not believe it when I told her that I had a meeting with my midwife and haematologist in the same room prior to the birth.

So, to the healthcare professionals in the room, please keep finding ways to make patients the centre of care – and consistency of care, and coordinated multi-disciplinary care are critical factors.

AND NOW

I am pleased to report that I am on the other side of my pregnancy journey, with a very cute one year old baby boy. We recently found out that our son has not inherited the disorder, so the advocacy I began for him during my pregnancy can now be focused on supporting others in my family, in our community, and on continuing to advocate for myself.

Regardless of the journey you are on, whether you are advocating for yourself or a family member, I encourage you to start by understanding your symptoms, your choices, your emotions, and your support system. Please know that you are empowered to make choices, and your emotions should never be dismissed or underestimated.

And if you are a healthcare professional supporting someone with a bleeding disorder, please continue to provide the tools to make these decisions and advocate for what they need, please do not dismiss the additional emotions a bleeding disorder can bring, and please talk to each other.