After years of bleeding symptoms and advocating for her own son with haemophilia, Dawn Rotellini was diagnosed as a symptomatic haemophilia carrier at the age of 59.
She shares her experience being diagnosed, and why it is so important to advocate for women and girls with bleeding disorders. She also gives her top three tips for other women and girls advocating for themselves.
Dawn is COO of the National Bleeding Disorders Foundation (NBDF). Her work with the WFH Women and Girls with Bleeding Disorders Committee has shone a light on the need for improved diagnosis, treatment and care.
Dawn’s tips for advocating for yourself when you have a bleeding disorder:
- Understand the signs and symptoms.
- Take a picture. Help your doctor see exactly what you’re seeing.
- Enter the conversation calmly. Help me help you help me.
Thank you Dawn for taking the time to speak with us about this very important topic.
Video transcript
I’m Dawn Rotellini and I’m the Chief Operating Officer of the National Bleeding Disorders Foundation. I was diagnosed as a symptomatic carrier of haemophilia B at the age of 59. That was only four years ago. I became involved in advocacy for women and girls with bleeding disorders because there just was no voice. I was on the board of directors for the World Federation of Hemophilia, and I was elected in 2018. At that time, I was asked to start and chair the very first committee, International Committee for Women and Girls with Bleeding Disorders.
And at the time, I really I knew that there were issues with late diagnosis, with under-recognising symptoms and signs and that that was a terrible impact. But until I took on this, this committee and this advocacy effort, that’s when I really started listening to women’s voices in a very different way. And I thought, oh, if we don’t do this now, we will be in the same situation in 20 years, without diagnosis, without recognition, without really, truly being included in the entire global bleeding disorders community.
Why advocacy is so important
Because everything centred originally around haemophilia, it was thought originally that women or girls could not have haemophilia. They were simply carriers or “just” carriers. And that word, “just” is such a dismissive word. It puts us in a category that means we don’t have problems and we don’t count, and we really don’t need anything. And until we discovered, of course, that women can have haemophilia, that women do have von Willebrand disease, that women have other bleeding disorders. It became finally a platform to be able to raise voices and make sure that everyone knew we are part of this community and we deserve access to timely diagnosis, information, education, all the things that the entire bleeding disorders community needs.
It shouldn’t matter where you live in this world. You deserve access to treatment and care, and it shouldn’t matter whether you are a female or a male. You deserve access to treatment and care.
Along the journey over the past eight years, since the beginning of that committee, I have met women that have had life altering surgeries just because they had bleeding and they weren’t allowed access to treatment. I have heard stories about young women, young girls dying after a tooth extraction because they never got diagnosed with von Willebrand disease, and it’s now suspected that that’s what’s in the family. We don’t understand the signs and symptoms, and that’s the first step for all of us getting access to care and treatment.
If your period lasts longer than eight days, that’s a problem. If you have to change your pad or tampon within every hour, that’s a problem. That’s not normal. But those things are taboo. And so that keeps us locked away because we don’t naturally share that with others. And we don’t understand that those signs and symptoms are not normal and that we should seek access to care and treatment.
Dawn’s tips for women and girls advocating for themselves
My top tips for women and girls who are advocating for themselves with a bleeding disorder.
Tip 1: Understand the signs and symptoms
Number one: we must understand the signs and symptoms. Do you know what the signs and symptoms are? It might be bruising and just prolonged and deep bruising for no apparent reason. It also might be after a dental work or a tooth extraction that you bleed for a very long period of time. And when I say long period of time, I mean days, that’s not normal.
The other top symptom, and of course it’s taboo to talk about it, but we have to get used to saying the word, ‘period’. We have to get used to talking to each other, because heavy menstrual bleeding is a huge sign of a bleeding disorder. If you bleed longer than eight days. That’s not normal. If you have to change your pad or tampon within every two hours, that’s not normal. And if you pass clots the size of a [50c] coin, that isn’t normal either. So those are some of the signs and symptoms that we all need to be comfortable talking about. If we can’t talk to each other about this, we will never get access to care and treatment that we deserve.
Tip 2: Take a picture
My number two tip: take a picture. It is so difficult to dismiss your symptom if you have proof. I know we shouldn’t have to do it, but we have to. So if we’re going to take control over our bleeding disorders, then this is one thing that you can do to help the doctor see exactly what you’re talking about. This could be deep bruising. It could be swollen elbow, something that doesn’t look quite right. It could be, I know, back to periods, a clot in the toilet. I am telling you, if they see what you have been experiencing, that will make all the difference.
Because we can describe it. But sometimes we diminish ourselves and we don’t really say what it actually looks like, partly because this is what we’ve been experiencing our whole lives. So it’s not really unusual for us. But when you go to seek diagnosis, show what you’re talking about. It’s okay to take a picture of your pad if it’s completely saturated and you actually just changed it an hour ago. Show the proof. Taking pictures of any of your signs or symptoms is a very, very helpful way for the health care providers to get you access to the diagnosis and treatment and care that you deserve.
Tip 3: Enter the conversation calmly
My number three tip is to enter the conversation in a calm way that can be so difficult if you have been dismissed for the majority of your life, or you just don’t feel heard. Sometimes we go in and we’re ready, right? We’re ready. I know what I’m going to say. And you go in there and you’re excited and you might come across as aggressive or even angry, which rightly so. You haven’t had access to treatment and care. And that can feel really, really frustrating.
Go in with a tone of calmness. You can be firm and you can ask them to help you get access to treatment and care. I learned across the years, actually in advocating for my son. I learned that you can go in and be angry and aggressive and you will, you will just get shut down and turned away. Because how do we feel when someone comes with full force against us? We go, oh, that, that feels a little like I need some distance.
You can value that anger. And in that 30s it feels great. But at the end of the day, you walk out with not what you needed. Or you can value getting across, being heard. And if you can value that and use your tone for helpfulness and openness and asking for help, that goes such a long way because someone will lean in and be, ‘Oh my gosh, I absolutely want to help you’.
That third tip just absolutely you have to do that every step of the way. So no matter your journey, no matter your experience, go in with ‘help me help you help me’ attitude.
