Michelle first experienced bleeding symptoms, in the form of really flooding periods, at the age of 19. Nineteen years later – she got a diagnosis.
Michelle talks to us about her journey to being diagnosed as a ‘symptomatic carrier’ of haemophilia B, and how valuable receiving that diagnosis was.
“It can be incredibly frightening. To know something is really wrong with you and to not know what it is. One of the reasons diagnosis is great is because it ruled out things. I was worried I had something much more sinister. But the more you know about having a bleeding disorder, the more you can get your health back. There are treatment options out there.”
The theme for World Haemophilia Day in 2026 focuses on diagnosis as the first step to care, shining a light on the many people around the world with bleeding disorders – including women and girls – who are currently undiagnosed, limiting their access to treatment, care and support. Learn more about women and girls with bleeding disorders.
Read the transcript
Pauline: Hi, I’m Pauline, and I’m chatting today with Michelle about her journey to diagnosis.
I’m Michelle. I’m a woman with a bleeding disorder that is classified as being a ‘symptomatic carrier’ of haemophilia B.
Pauline: Can you briefly just tell me a little bit about you and your bleeding disorder?
Yeah. So I first experienced bleeding symptoms, in the form of really flooding periods at age 19. And nineteen years later, I got a diagnosis. Knowing that something’s not right and not knowing why is very frightening.
I think before diagnosis, it was very disjointed. Oh, I’m experiencing some symptoms. Get them treated more as an episode. Go away. And then when the [symptoms] returned, the medical professionals were always a bit, ‘But we fixed that.’
There have definitely been times where I was offered – when I was asking for blood tests and iron studies and iron infusions – psychology, offered anti-depressants.
And that was really shocking to me because I would say I was a confident, independent woman who was well educated. And I’m actually working as a high level health professional myself.
So it was very difficult, knowing how to recognize symptoms when I didn’t know I had a disorder and what symptoms to look for. It was difficult to know what treatments would be appropriate. And even when I started to get that knowledge for myself, it was incredibly difficult to access this due to the really low awareness – and I saw a lot of different medical providers – that this could be a bleeding disorder in a woman.
The feeling at the time was ‘symptomatic for haemophilia’ meant that you had excessive bleeding from a paper cut and you needed to rush to the hospital. And so even though I’d already started experiencing symptoms of my own in the form of really heavy menstrual bleeding, I never put the two together.
And I didn’t know anything about iron deficiency anaemia. So when I was seeking help for that from doctors, I didn’t know to connect that to heavy menstrual bleeding. Because it was really strange things – pounding heart, really feeling like I couldn’t breathe, I couldn’t get enough oxygen, and I couldn’t catch my breath, the incredible anxiety that comes along with this pounding heart, the really low exercise tolerance, the cravings, the pica. so, like, craving ice instead of a meal!
And so I started to advocate for myself a bit more and be like, I’d really like to request this test. But the level of knowledge in the GP community, and even in my gynaecology specialist just seemed to be really resistant and uncertain to investigating that.
So I would think I had asked to get my factor levels checked, to see if that could be excluded. And then I’d get the results. And they hadn’t actually ordered that.
I reached out to the Haemophilia Treatment Centre, to say, look, this is me. This is my symptoms. This is my experience. I’d really like to just at least get this ruled out as a possible cause. And it was just so effortless. They were happy to see me. They were happy to see me promptly. They believed me.
They ordered the factor testing, going, look, this might actually not show us what we need to show. You still might need further genetic testing.
So I think I was the least surprised by my diagnosis. I think my family were very surprised. And I think that it is really, really rare. So even the Haemophilia Treatment Centre did seem a little bit surprised because it is the rarer form of haemophilia that don’t get a lot of late diagnoses, of women coming forward.
Pauline: Do you have any advice for other women undertaking this journey to diagnosis?
Definitely persist. It’s so worth it to get diagnosed, because then you know what you need for your own health. And it can be incredibly frightening. To know something is really wrong with you and you don’t know what that is.
One of the reasons diagnosis is great because it ruled out things. I was worried I had something much more sinister. And the more you know about having the disorder and being able to know what you need, the more you can get your health back.
We’re living in a great time. There’s definitely treatment options. But I think what I’d say to people is you’re worth it. You can feel really powerless as a patient. You can feel really powerless if you’ve been dismissed and not believed. You could be second guessing the severity of your own symptoms. It’s very disempowering.
You can have people who might be recommending psychology or anti-depressants when actually you’re looking for support with blood loss, and the effects of losing iron. It really feels like you get your life handed back to you with diagnosis and with correct treatment.
So I think that what I’d say to people is that the future’s bright. You know, there’s more things coming out and being available and things might work for a period and then they don’t and then you have to try something else. But there’s so much more resources and things going into women’s health.
Pauline: Amazing. Thank you so much for taking the time to chat with me today. I really appreciate it. And I think this is a very important message to get out. So really, thank you.
Thanks very much.
