Researching her own condition was one of the main factors that led Catherine, 26, to a career in science – she works as a Healthcare and Life Science Consultant at a major tech company. Catherine was raised in Toulouse, France, was born in the UK, and has been fortunate to have lived in various places.
“I have always struggled with bruises and bleeding; particularly nose bleeds. I was never taken seriously until it became seen as disruptive at secondary school. My mother worried about the length of my nose bleeds and the amount of blood I lost with each one. She spent years going back and forth trying to figure out what was wrong. No-one took the complaint seriously until the school complained to my GP, a few weeks after which a doctor suggested we could test for a bleeding condition such as Haemophilia. It took a few days for them to decide if it was worth testing for such a male-dominated condition.
I was around 11 when I was finally diagnosed with Haemophilia B, factor IX, with factor levels at 2%. My mother is a carrier with levels of around 60%, and my father doesn’t have any affected genes.
I was bullied and made to feel embarrassed about my condition growing up. I would have nosebleeds easily after small knocks, temperature changes, or due to bruising, and my teachers would send me to the matron to have them, so I did not disturb the class. No one tried to talk or explain to my peers about what was happening. Luckily, when I moved to France the perception of people around me was so different and inclusive.
I feel like there’s a stigma attached to bleeding if you are a woman. At school it was as if when boys had nosebleeds they were perceived as ‘warriors’, and it was a manly thing, but as a girl I was shamed. I always felt I had to apologise for my nosebleeds. I would say ‘I’m so sorry’, even though it isn’t my fault.
When it came to my latter years at school, what became quite debilitating was my heavy periods, even though they are not taken seriously as a symptom. They had a huge impact on my body. At school I had to change my protection around four times a day. The combination of nose bleeds, bruising, and periods created a mixture of exhaustion, and the lack of ability to talk to anyone about what I was going through was isolating. I was fortunate enough to have an extremely supportive and protective family.
Even today, my friends without bleeding disorders with any period problems face a huge struggle to get the care they deserve. I don’t want to see other girls going through what I did at school, or not managing to go on to higher education or achieving in their careers because of heavy periods. I would love to see more women talk about their struggles and experiences. I am fortunate to be in a supportive company but a three-hour nosebleed during a meeting can be pretty damaging to your job progression! What we need is to be supported in and out of the workplace.
And it’s not enough for doctors just to say ‘you’re tired because you have an iron deficiency’ – perhaps the iron deficiency is triggered by the excessive bleeding! Tranexamic acid is also not enough; we should have more options like boys do when they are diagnosed. I have experienced many medical professionals not taking girls and women seriously if you talk to them about your bleeding symptoms or your condition. They always have similar sentiments, ‘if you were a boy, we could do this or this’, but I always question why it’s not about me in my appointments; why can’t I get access to treatment that would help my quality of life? Why are women never offered factor as part of their care plan?
In my late teens and early twenties, I was still struggling day to day with nose bleeds, very heavy periods, and being tired all the time. I only had an annual appointment to talk about my issues, and tranexamic acid was my only option to manage my symptoms. At one point it was suggested that I have my nose cauterised to deal with bleeding but that made it worse. That’s why I started to do my own research and, being a scientist now, I always go into my appointments prepared to discuss new research and treatment options.
I had tried various hormone replacement pills which didn’t alleviate many of my symptoms. I knew that I came from a female-dominated family who had all had great success on the Merina coil – especially my mother who was not diagnosed until her 40’s. She saw the coil implant reduce her bleeding and offer a better quality of life. I wanted to explore this as a treatment option. It took me 5 years of appointments and for me to sit in a Haemophilia clinic and demand to get the coil implanted before someone obliged – I was 23.
The difference that the Mirena Coil has made for me has been incredible; I would say there’s an 80% improvement. Lots of women will understand the worry of leaking; staining your clothes, sheets, or chair, but fortunately few women know what it’s like to walk in my shoes with periods and nose bleeds that decide (without fail) to start at an inconvenient time; it entirely takes over your life. But now, instead of a period for weeks on end, they tend to be erratic or, at the most, once a month, which is life-changing. I can go swimming; I can go for a run. It’s brilliant.
I really had to battle to be prescribed the Mirena Coil, but I would like to see this option offered more routinely to women, as for me, it’s been transformational. Every woman should be treated as an individual by a specialist. It really frustrates me that heavy periods are not considered a ‘serious’ issue when they absolutely are. I would like to see more support for woman with bleeding disorders, and to be able to meet annually with a Haemophilia specialist.
I feel ignored and overlooked in my appointments, as a few times I have been to a clinic for my yearly check-up and the doctor on call has got my condition wrong and has no experience of treating Haemophilia. Is it because I still have 2% of my factor? I constantly live in fear of an accident, or a serious issue forming, as who will be there to give me the specialist treatment I need?
Going forward, I hope to see women and girls who bleed given more focus and attention, so others don’t grow-up with the difficulties that I have faced.”