Bonnie’s story

Bonnie, 27, lives in Shropshire with her family. She’s has been a restaurant manager and worked in hospital administration, but at the moment she is cherishing being at home with her two children; Teddy, aged six, and Maeve, aged 16 months. 

Bonnie’s mum Julie was aware that her own father had had haemophilia, but before Bonnie was born, Julie was told that there was nothing to worry about as haemophilia doesn’t affect girls. However, six months after her birth, Julie noticed that Bonnie kept having bruises, and also a burst blood vessel, that wasn’t improving. After lots of tests and some disbelief, Bonnie was given the rare diagnosis for a female of severe haemophilia A. 

“I’ve still never met another woman with severe haemophilia A!”, Bonnie explains. 

“Not having known her dad, my mum had no knowledge of how to manage haemophilia and had to learn a lot very quickly. For the first three years of my life, my mum had to regularly travel quite a long way with me to London’s Royal Free Hospital, before she learnt to administer my prophylaxis treatment herself. She lives locally to me and still helps me to this day! 

I’ve had to become really good at advocating for myself. I really want to see women affected by bleeding disorders get the care that they deserve, so that they can manage their symptoms well and find ways to do whatever they want to do.

Bonnie

“None of my three sisters have been affected by haemophilia (though one is a carrier), nor any of our children, although perhaps when they are older the girls might decide to check if they are carriers. I completely understand why people might feel very anxious when their child is first diagnosed, but having lived with the condition for so long, I want to offer reassurance that I just get on and deal with it, it’s not the end of a normal life. 

“My mum let me do tag rugby, skiing, football, tennis, swimming…she made it so that I could take part, and never let me feel that she was worried even though as a parent, it’s second nature. You might have to make some moderations, find a way around things, and it might not be simple. But there is a way around it. 

“I would say that my condition has affected my job choices as I look for something that isn’t too physically demanding and not too long hours. My treatment has never eliminated bleeds and so I have some damage to my ankle joints. This means that walking too far or for too long can be difficult. I’m hoping to be put on to a new treatment, soon, though, which I hope will make a difference.  

“I feel very strongly that the impact of bleeding disorders on women isn’t given enough recognition. For example, no-one really talked about symptomatic carriers until the last few years and it’s only recently that I’ve started to see on online forums women talking about it. Women with heavy periods can often just be told that there’s nothing wrong with them, even though they could be prescribed tranexamic acid to help with the bleeding.  

“Another example is the new treatment Hemlibra®, where there isn’t enough data on its usage for pregnant or breastfeeding women. Women who are affected by bleeding disorders need specialist care, especially through pregnancy. As I’ve gone through these experiences myself, it’s usually me saying that ‘we need to do this’ or ‘contact this person’, rather than people supporting me! 

“Of course, I’ve lived with haemophilia all my life, so it’s easier for me to focus on what I can do and enjoy, rather than what I can’t. Growing up, I’ve never known anyone else in my situation, but it would be really nice if that could change and we could all start talking about women and bleeding disorders, because it affects us too.” 

Sign up for Talking Red Live which takes place on 5 March, 2022 in York for a chance to meet other women with bleeding disorders and hear from experts in treatment and care.