We’re proud to introduce a brand new video series, Women Talk. These videos feature women from our community sharing their story and advice for other women and girls with bleeding disorders.
The first three videos focus on, ‘What I would say to my younger self‘, and ‘Speaking up when your concerns are dismissed’, with Shauna, Lauren, Sal, Bel and Debbie all sharing their thoughts and experiences relating to their bleeding disorder.
What would you tell your younger self? Women talk
Shauna and Sal, who both have von Willebrand disease (VWD) to talk about the things they wish they could tell their younger selves.
Transcript:
My name is Shauna. I have type 3 von Willebrand disease. I was diagnosed from a very young age, probably less than a year old. I wish my younger self knew that it was okay to try more. If I want to do something, I don’t have to be limited by my bleeding disorder. I’m more capable than I think. The things that you might have missed out on outweigh the risk of giving them a go.
I’m Sal. I have von Willebrand disease, and I wasn’t diagnosed until very late, very late in life when I had a child with a severe type. If I was unsure that I was having heavy, bleeding, heavy periods or, you know, long periods, I would tell myself to investigate it. Things are a lot different to when I was young. With lots of online tools, and especially if you don’t have other girls or women that you can talk to.
Bel (factor X deficiency), Lauren and Debbie (haemophilia) share their experience having a bleeding disorder – and what they wish they could tell their younger selves.
Transcript:
My name is Bel. I have severe factor X (10) deficiency. I was diagnosed when I was born. I wish my younger self knew that even though it feels like the worst thing in the world at times, it will get better. You will get your independence, you’ll live your life, and you’ll still get to do everything that you want to do.
I’m Lauren. I was diagnosed with mild haemophilia A when I was 23. After years and years of bleeding issues. My brother has haemophilia, but we weren’t sure if I was a carrier, so it’s a bit of a shock, but very validating. If I could go back and give my younger self some advice, I think I’d say that, ‘Don’t doubt yourself’. You are the expert when it comes to your own body. You know what’s going on in your body so much better than anyone else does. And even though it can be hard to advocate for yourself, reach out. Find your people. Use those resources that are available and really fight for equal treatment and diagnosis.
Hi I’m Debbie. I have haemophilia A. I have a family history of haemophilia, so I knew from a very young age I was probably a carrier, but I didn’t know that I had haemophilia myself until my early 20s. I’d like to tell my younger self that you’re stronger than you are aware, that you don’t have to go on this journey alone, to reach out to your community. The friendships and support and lived experiences from other people who are going on the same journey as yourself will really support you through this journey and make the whole process so much easier.
Speaking up when your concerns are dismissed
How can women with bleeding disorders speak up when their health concerns are dismissed? Shauna, Lauren, Bel, Sal and Debbie all share their thoughts – and what they wish they’d been able to tell their younger selves when seeking a diagnosis for their bleeding disorder.
Transcript:
Shauna: I wish that I knew the benefits of being prepared for a conversation that might not go the way that you think it will. Understand different ways to approach a question, if you aren’t necessarily receiving the answer that you were hoping for. Understanding your escalation pathways if you need them.
Lauren: Something I wish I’d done differently, and advice I give to anyone going through the process is always to document everything. Keep a period diary. Write down your symptoms. Just to really have the evidence there, so that you feel you can rely on that when you go to advocate for yourself. Because I think being able to present written documentation of, ‘this is what is going on in my body’. And then you’ve got that evidence there, and you can really present that as part of your case to really get the diagnosis that you need.
Bel: Just because doctors are telling you. One thing. You can still ask questions and speak up. You don’t need permission to feel heard when it comes to your health, and to reach out to the community if you ever need.
Sal: I always trust my gut feeling. That feeling of unease when you think there’s something that hasn’t been answered or someone’s not listening to you. Do your research. Go to medical professionals with your information and get some ideas online.
Debbie: You know your body more than anybody else. If something doesn’t feel right. Don’t be afraid to ask for a second opinion. Bleeding disorders are rare, and you may find yourself in a room with health professionals, and you actually know more than they do. Take information about your bleeding disorder with you and be prepared to self advocate. Your opinion matters and you deserve to be heard.
Thank you to Shauna, Lauren, Bel, Sal and Debbie for sharing their experiences.
