3rd February 2022 • Haemnet Research

It’s not all about boys

By Kathryn Jenner

Haemophilia is not the most common inherited bleeding disorder, but it is the one that most people have heard of. It is sometimes referred to as “the royal disease”. Queen Victoria is much cited as the root of the genetic trait that resulted in various European royal families being affected by haemophilia in the 19th and 20th centuries – but despite this infamy she was “only a carrier”.

Only a carrier?

There is a commonly held belief that haemophilia only affects men; that men experience the bleeding symptoms that characterise haemophilia, while women simply “carry” the haemophilia gene.

In medical terms, carrying something means that you have an illness or condition that you are liable to pass on to others. It also means that you support or move something from one place to another; that you transport, conduct or transmit it; that you have it about your person. It isn’t too difficult to see how labelling women as “carriers” of haemophilia belittles the impact it can have on women.

The truth is that women are affected by haemophilia. This is the key message in the second animated film from Haemnet’s Cinderella Study, a programme exploring the lived experience of women with bleeding disorders.

A Cinderella story

It’s not all about boys is based on the real-life story of a young woman who shared her experience of living with haemophilia with the Cinderella Study team. Haemophilia is part of her family history: her father and her grandmother are both affected by it too. She describes starting her periods as being a particularly difficult time – she experienced very heavy bleeding and sometimes missed out on school as a result. She now has access to medications that help this, but she is quizzed about her haemophilia when she picks up repeat prescriptions. At her school, a teacher tells his class that only men suffer from haemophilia and is dismissive when one of her friends tries to correct him. The one thing she would change is to improve awareness that women can have haemophilia too.

It can be hard enough being a woman with haemophilia – it’s even harder when people don’t believe it’s possible for you to have it.

Women and haemophilia

Women who have the haemophilia gene can have low levels of factor VIII (haemophilia A) or factor IX (haemophilia B). In many cases, if they were men, they would be diagnosed as having haemophilia. Like men with haemophilia, they can experience bleeding symptoms, including easy bruising and bleeding after surgery or dental work. If their factor levels are low enough to indicate moderate or severe haemophilia they can experience joint and muscle bleeds – and although rare, such women do exist.

On top of this, there are bleeding risks for women affected by haemophilia that men don’t have. Around 50% of women with the haemophilia gene have heavy periods, which can be debilitating. If a man with haemophilia were to experience a serious bleed on a monthly basis, his health care team would be concerned. Women with the haemophilia gene may also experience prolonged bleeding after childbirth.

And yet the impact of haemophilia on women and girls continues to be underestimated and even unrecognised.

There are more women with the haemophilia gene than there are men with haemophilia. Bleeding as a result of having the haemophilia gene impacts the lives of many women in some way. These women are women with haemophilia.

Talking Red

The Haemophilia Society’s Talking Red campaign is working to raise awareness of how women are affected by bleeding disorders including haemophilia. In 2022, this includes a free to attend Talking Red Live event on Saturday 5 March in York for women and girls with bleeding disorders, their partners and families.

It’s not all about boys

Only a carrier?

A Cinderella story

Women and haemophilia

Talking Red

Further reading